Does an increase in t4 necessarily mean a reduc... - Thyroid UK

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Does an increase in t4 necessarily mean a reduction in TSH?

Mickeydooley
Mickeydooley

My last results showed a suppressed TSH but I still feel under medicated. My endo didn’t increase my Levo because my TSH was 0.02. I’m currently taking 75mcg Levo and 20mcg t3. My t3 was 62% through range and t4 32% through range. If I increased my Levo to 100mcg would my TSH fall further? Would this be an issue? I don’t want to overdo things but I still feel like I have hypo symptoms including feeling cold, anxiety, poor sleep and exhaustion. I’m also experiencing shakes some days which I feel are due to adrenals. My basal temperature is all over the place (can be up to 36.2 degrees one day and then crashes to 35.5 the next). My resting heart rate is mid 50s to low 60s. I completed a regenerous saliva test this week but unfortunately Royal Mail lost my parcel so I’ll have to redo! 😩

100 Replies
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SlowDragon
SlowDragonAdministrator

Did you improve vitamin D

healthunlocked.com/thyroidu...

Did you get Dexa scan ?

You were thinking of trying 75/100mcg on alternate days

Increase in levothyroxine will increase Ft3 as well slightly

I have been supplementing with Vit d and k2 spray for a while now and have the vitamin D test ordered. I recently received news from the hospital to say the DEXA scan has been booked for the end of March. I had been thinking of increasing Levo on alternate days and I’m sorry for asking again but I’m very concerned about the TSH. I keep wondering if the shakes I’m having could be related to suppressed TSH but am more and more convinced from what I’ve read that it’s to do with cortisol. I have been feeling very unwell lately.

TSH does not cause symptoms whether it's high or low. It's T3 that causes symptoms. Could be your FT3 is not high enough for you. :)

Thank you for the reassurance. I’ll try increasing levo on alternate days.

Hylda
Hylda
in reply to Mickeydooley

I function best with a TSH of 0.02

Why not every day?

Thought I’d take it easy! Bit scared to overdo it. My endo will go ballistic if my TSH goes any lower and may take me off t3 altogether. I don’t see him for another 3 or 4 months so wanted to try it out so I have time to reduce again before next appointment if I need to. I thought my levels weren’t too bad as they were?

It can't go much lower than 0.02. You can't have minus numbers. And the odds are that it will, anyway. But even if it goes to zero, there's not much difference between zero and 0.02. :D

greygoose
greygoose
in reply to greygoose

It would be totally irrational of him to take you off T3 for that! But could be just the irrational excuse he's looking for. :(

I’m very tempted to give it a try. Thank you.

Can I ask a possibly ridiculous question? If my shakes are to do with adrenals and I do something to sort that out will it help my TSH level to rise? Maybe not connected at all but I don’t really understand how this all works.

I really don't think so - although we do have surprises sometimes, so never say never. The TSH responds to level of thyroid hormones. It's a pituitary hormone. When the pituitary senses that there's enough thyroid hormone in the blood, it reduces, and finally stops, production. The snag is, where T3 is concerned, the pituitary gets first dibs. So, it can decide that there's enough hormone as soon as it's got enough for itself, but the rest of the body is still hypo. Which is why you can have a suppressed TSH, but Free levels still aren't high enough for you to feel completely well.

The adrenals don't have any contact with TSH. They, too, are controlled by the pituitary, but by a different system.

Thanks for the explanation. I was just hoping that if I corrected one thing it might help the other. Your advice is much appreciated as usual.

You don't need 'help' with your TSH. The system is going according to plan. You don't need the TSH, so the pituitary has stopped producing it. It's perfectly normal.

That’s good to hear but I’m not sure my endo will be convinced!!

I don't know how you have the patience to put up with an endo! I couldn't do it! I'd end up thumping him. lol

I get close sometimes but I absolutely hate doing fingerprick tests and I wanted to be monitored. I had been trying to convince my gp to increase my meds but he refused and referred me to an endo. When I asked about t3 he admitted he knew nothing about it.

That is frankly scandalous. An endo that knows nothing about one of the most important hormones in the body. The whole medical system should be ashamed of itself!

The name 'endocrinologist' implies that they know all about the whole endocrine system, including ALL the different hormones. Why don't they just be honest and call themselves diabetologists, or something. I think they're in breach of the Trades Description Act!

Sorry! I misled you. The doctor referred me to an endo because he knew nothing about t3. The endo was fine but very concerned about my suppressed TSH so wouldn’t increase my meds. Brain fog! Didn’t re read my message before I posted

OK, but same comment goes: he knows nothing about TSH - TSH is a hormone - what it's for and what it does. He doesn't understand the endocrine system.

Agreed! I’m very grateful for all the advice and info on this forum and to the admins who spend so much time answering questions from anxious people like me! Thanks again.

You don't have to be an admin to spend time answering questions…

Very true! I’m sorry! I was under the impression that you were an admin and am very grateful for any advice that I receive here from admins and members alike. I didn’t mean to offend. Many thanks.

Well, admins do have 'admin' after their name. :)

Steni
Steni
in reply to Mickeydooley

I always thought Grey Goose was an admin too !

Mickeydooley
Mickeydooley
in reply to Steni

Not just me then!

TSH110
TSH110
in reply to Steni

Me too! Can we elect admins by popular demand? GG would have admin accolade added in a trice!

I too was amazed when my GP recently told me he knows nothing about T3!!

When I said " but T3 is the active hormone " he raised his voice and told me he didn't need a lecture" .............I was speechless!

I will see my Endo tomorrow( 17/02) who is now responsible for prescribing my T3 which I will have to get from the hospital pharmacy........just hope it's still open after my appointment,or will have another 16 mile round trip to get it next day.

It will be blood pressure tablets next !

TSH110
TSH110
in reply to greygoose

Pity we can’t shop them to trading standards - they deserve to be had up for fraud!

greygoose
greygoose
in reply to TSH110

They certainly do!

Hi greygoose. Labs here have a bottom number they stop recording at. Do labs over there? At the lab I use, it’s <0.008. Last year I was somewhere below that number for about 6 months. They recorded my results as <0.008. With my TSH that suppressed, my FT3 and FT4 were “only” 65%-70% of range by taking T4 and T3. Dumb dumb doctors tried to tell me I was hyper.

They always do try to tell you you're hyper with a low TSH. Most of them are so ill educated that they don't even realise that if you're hypo you can't 'go hyper'! They have no understanding of what the TSH is or what it does.

There obviously is a cut-off point below which they can't measures TSH. But, when it gets that low, does it really matter? What the cut-off point is, I would imagine depends on the machine they're using to analyse the blood.

It's quite comical, isn't it? No, they don't have any understanding at all. They are so hyper-focused on TSH, when it's optimal FT3 and FT4 levels they should be focusing on. Instead, they turn a blind eye to where FT3 and FT4 are in the range when the patient experiences the least amount of symptoms. If they would actually read the prescribing instructions for levothyroxine, and let the instructions sink in, they would see that TSH is supposed to be suppressed, and hormones are supposed to be increased until a patient is euthyroid. On the Synthyroid (and generic levo) prescribing instructions it actually says:

"Pituitary Thyrotropin (Thyroid Stimulating Hormone, TSH) Suppression"

"Secondary or Tertiary Hypothyroidism (Secondary Hypothyroidism is the same as Central Hypothyrodism, which is when something is wrong with the H-P-T axis causing TSH to be low, and thyroid hormones to be low):

"Serum TSH is not a

reliable measure of SYNTHROID dose adequacy in patients with secondary or tertiary

hypothyroidism and should not be used to monitor therapy. Use the serum free-T4 level to

monitor adequacy of therapy in this patient population. Titrate SYNTHROID dosing per above

instructions until the patient is clinically euthyroid and the serum free-T4 level is restored to the

upper half of the normal range."

It's frightening that if they cannot grasp thyroid function and they cannot interpret thyroid laboratory results, how did they ever make it through med school??? What other health problems are they attempting to treat that they do not comprehend, and what damages are they doing to those patients??? Has anyone died in their care due to their lack of comprehension and mistreatment, or do they just adequately treat patients and leave them suffering endlessly?

--How difficult is it to understand that TSH comes from the pituitary gland and that by itself TSH causes no symptoms? Apparently this concept is beyond their understanding.

--How difficult is it to understand that if the pituitary gland does not produce enough TSH to stimulate the thyroid into making more thyroid hormones, when you supplement thyroid hormones (in my case T3 and T4), thyroid hormones will increase and TSH will decrease even further? Again, this is too complex of a concept for them to grasp.

--How difficult is it to understand that the hypothalamus, pituitary gland, and thyroid all work as a team? This is never mentioned to the patient. They don't understand that if something is wrong with the hypothalamus or pituitary gland, the pituitary gland won't be able to produce enough TSH. They cannot understand that THAT is why some patients with "naturally" low TSH and low thyroid hormones are hypothyroid, not HYPERthyroid. There is no possible way that patient can be HYPERthyroid!! Hyperthyroidism is never diagnosed based on low TSH alone. How difficult is it to know? Sure, a patient could be over medicated if their FT4 and FT3 are too high and if they have symptoms reflecting high thyroid hormones, but this is NOT the same as being HYPERthyroid!

--How difficult is it to understand that if there is a problem somewhere within the H-P-T axis (hypothalamus, pituitary and thyroid relationship), that the last one in that relationship (the thyroid) is not going to receive the right message, is going to get the short end of the stick, and will not function correctly? This is beyond their comprehension. If a patient has "naturally" low TSH and low thyroid hormones, there is not a thing they can do about increasing their TSH (as if TSH even matters??). Such a patient is always hypothyroid, not hyperthyroid, yet these doctors cannot grasp this simple concept.

Exactly!! When TSH is that low, does it even matter? Unless there is a pituitary tumor causing the low TSH or a particular medication that is causing low TSH, there is not a thing that can be done about "naturally" low TSH that becomes very suppressed when thyroid hormones are supplemented. WHY focus on a pituitary hormone that causes no symptoms, anyway? This lacks complete logic.

👏👏👏

hormones are supposed to be increased until a patient is euthyroid.

Ah, no. That is another mistake doctors make. Euthyroid levels - which is to say levels of people with no thyroid problems - are not usually good enough for hypos. Hypos tend to need more hormone, and high levels. Doctors comparing hypos with euthyroid people and expecting them to react the same, is another reason we stay sick.

It's frightening that if they cannot grasp thyroid function and they cannot interpret thyroid laboratory results, how did they ever make it through med school???

Well, that's just the point. Getting through any educational system is just a matter of ingesting what you're told and regurgitating it during the exams. They are not taught anything much about thyroid, nor about nutrition, nor how to interpret blood test results. Therefore, they will not have been tested on these things. So, lack of knowledge in those areas would not have stopped them getting their diplomas.

WHY focus on a pituitary hormone that causes no symptoms, anyway?

Because that's what Big Pharma wants them to do. Therefore, that is what they learnt to do in med school. And, what they learnt in med school is scared. It is rarely questioned. And, it's Big Pharma we have to thank for this mess!

There are no exact levels to measure to establish when a person is euthyroid. It’s unfortunate that heavier emphasis is not put on maintaining FT3 and FT4 levels where a patient feels their best, whatever that level may be. Euthyroid is based on absence of symptoms, cannot be determine by any universal mark in lab range, and is completely individual. It’s also unfortunate that greater emphasis is not put on OPTIMAL levels varying per person.

It’s negligent that there is one large lab range consisting of too low, too high, and in the middle for each lab test that are all considered “normal”. You could be at the lowest number of range, and nope! You’re “normal”. You could be at the highest number of range, and nope! You’re “normal”. Then they throw the correlating symptoms when too low or too high out with the baby in the bath water. It never occurs to them that somewhere in the middle is a place that the patient has neither low symptoms or high symptoms.

The exact same lab tests and same lab ranges are used for people with non thyroid disease, as those with thyroid disease. Both are considered normal. Levels to reach euthyroid vary per person, whether they have thyroid disease or they don’t. All euthyroid is is the state when there are no hypo or hyper symptoms. Optimal FT3 and FT4 levels to reach euthyroid vary per thyroid disease patent and on-thyroid disease patient.

Levels of FT3 and FT4 for hypos to reach euthyroid are also completely individual. Hypos don’t need more hormones. They just need theirs replaced with enough so that they don’t have symptoms. Hypos don’t necessarily need their levels to be high to have the least amount of symptoms. Some might. Some need their’s to half range. Some need theirs between half and 3/4. Some need theirs at range. Some experience hyper symptoms if their levels were elevated to too high in range. It’s all individual. In general, the optimal level for each person lies somewhere between half range and towards the top of range.

There are no exact levels to measure to establish when a person is euthyroid.

Well, actually, there are.

It’s unfortunate that heavier emphasis is not put on maintaining FT3 and FT4 levels where a patient feels their best, whatever that level may be.

That is true.

All euthyroid is is the state when there are no hypo or hyper symptoms.

No, euthyroid means not having any problems with the thyroid. It means having a thyroid that works perfectly, with all levels balanced, and no antibodies. But, where thyroid disease is concerned, 'euthyroid' is not a word that has any place in the discussion. So, I'm not going to argue the toss about the definition of euthyroid anymore. :)

TSH110
TSH110
in reply to greygoose

Gosh I did know that is what euthyroid really meant - clearly it should not be used to describe us then.

greygoose
greygoose
in reply to TSH110

That's my opinion.

TSH110
TSH110
in reply to greygoose

Well it makes sense our thyroids are done for, they need to get us as well medicated as possible so we have as fewer symptoms as possible - as if it were the complicated nonsense they make it, it is blindingly obvious to me what they need to do. I am astounded that so many of them just don’t get it. We were better off with no blood tests and NDT if you ask me.

greygoose
greygoose
in reply to TSH110

Not all of us, no. NDT made me very ill. It doesn't suit everyone.

TSH110
TSH110
in reply to greygoose

Fair dues, but would you be the exception rather than the rule? I feel the blood tests allow physicians to ignore our symptoms or maintain they are imaginary, yet so few of them seem capable of understanding the results and using them appropriately. It’s not blood tests persay but poor interpretation of them. No doubt they are very important if you need to take synthetic thyroid hormones, but I still wonder if more people actually feel better now than previously. I thought that T3 monotherapy was provided even back then if NDT did not suit, not sure when it was isolated and used medicinally though.

Quite interesting info here: google.co.uk/amp/s/thyroidp...

greygoose
greygoose
in reply to TSH110

I certainly didn't say I was the rule! I said NDT doesn't suit everyone, and I was one of those it didn't suit. We do see others on here saying the same thing. Yes, I know a lot of people feel better on it, which is why I moved heaven and earth and broke the law to get hold of it. And, actually, Armour did suit me, before they changed the formula. But none of the others ever have.

I agree, doctors not being able to interpret blood tests results and trying to squeeze everyone into the same mould whatever they're taking, is a huge part of the problem.

I thought that T3 monotherapy was provided even back then if NDT did not suit,

Back when?

Interesting article, thank you. :)

TSH110
TSH110
in reply to greygoose

Looks like it was the 50’s so pretty late on in the day for NDT which I understand was on the wane by the 60’s, but interesting that it was so efficacious and preferred over NDT by the majority according to that article by Dr Tania Smith.

Really we need a true choice between treatments so the patient can take what they like best or what suits them best. If it suits it ought to be the best option for you. My other hypothyroid family members all love/d Levothyroxine I am the only one it did not sort out. I have the DIO2 disorder which might explain it.

greygoose
greygoose
in reply to TSH110

Totally agreed! We need the freedom to chose!

I don't know about the 60s. I wasn't diagnosed until 2000. And put straight onto levo. Which didn't suit at all! Even though I convert perfectly. Synthetic T4+T3 was better; NDT was a catastrophe; and I've only been really well on T3 only. But, I've had to self-treat because of a) doctors don't like T3 only b) they won't give me the amount of T3 I need.

TSH110
TSH110
in reply to greygoose

Do you have any idea why those two did not make you well again? I think really it must be far more complex than current understanding allows - I was amazed when diogenes said there were something like 38 thyroid hormones so there must be a huge amount still to elucidate. I also have a gene for thyroid resistance (as well as the DIO2 poor converter gene combo) but I still don’t really understand what that might mean except needing a higher dose to overcome it. I think Dr Tania Smith has discussed it but I found it went too over my head to grasp it properly - might have another bash at reading it. I think it is free T4 that I find hard to get or just too many numbers that my poor old brain can’t deal with it anymore. I was diagnosed with autoimmune atropic hypothyroidism c2012 after a hyperthyroid misdiagnosis - although I think they were not fully convinced as I had another blood test immediately after the first results and they rediagnosed as above...but I probably needed a diagnosis in 2000 if not before! It is totally unfair that you have to self medicate - none of us should have to do that.

greygoose
greygoose
in reply to TSH110

I don't really know why they didn't make me well, but I'm guessing that there just wasn't enough T3 for me long-term.

Having said that, I have experimented since, using my long-term dose of 75 mcg as a base and trying different dose of levo, with appropriate adjustment of T3, to see if I can tolerate levo now. The over-all conclusion is that I just can't. It just feels wrong, and it's such a relief when I gave up the levo. But, I don't think it has anything to do with it being synthetic because of the way I reacted to NDT. I just don't know.

There is still a lot left to elucidate. The hormone specialist I saw in Paris reckons there are still an awful lot of hormone still left to discover, not just find out what they do, but discover their existence. Living beings are so very, very complicated. It's mind-blowing. So all we poor hypos can hope to do is muddle on and improve more by luck than judgement.

To be honest, I really prefer to self medicate. I just cannot bear the presence of doctors - even the nicest ones. Their total lack of self-questioning is intolerable to me. I just don't want to have anything to do with them. It's far too stressful and very bad for my blood pressure! :)

TSH110
TSH110
in reply to greygoose

Yes I prefer to self medicate too it seems to have worked a lot better than what they managed to provide. I was amazed to discover from Dr Tania Smiths blog that I did have a form of Graves disease after all which is what she says is atropic autoimmune thyroiditis . It would explain a lot about my symptoms (very mixed) and why my eyesight went right downhill plus why I have markers for Graves but not Hashimotos in my 23&me data. Many close female family have some sort of thyroid disorder, thyroid cancer hypo and hyperthyroidism. There must be something strongly genetic going on but the outcome varies. What I find odd is that I would have thought studying such people would be of value but it seems if you have thyroid disorder the medical world only want to study young fit people with no trace of it! How is that ever going to forward our knowledge? It’s absurd reasoning - small wonder they knew more long ago than they seem to do now. I have never once been asked if I’d like to help with research and the trials I have seen exclude the very age group smitten by the problems. It’s as though they don’t really want to know any more and foolishly believe it is all solved anyway.

greygoose
greygoose
in reply to TSH110

I don't think they do want to know any more, no. I think they're scared it would reveal how wrong they have been for such a long time.

To be honest, I couldn't really understand what atropic autoimmune thyroiditis is.

TSH110
TSH110
in reply to greygoose

It certainly seems to better describe what I had - it was deffo not standard hypothyroidism I was on the go for years so much energy it drove me nuts. The hypo periods slowly increase and the non stop hyper slowly reduced to shorter phases. I was like a rake and no sign of a goitre whatsoever. I must look up my old endocrinologist blood tests and see if any antibodies were found and if so what they were but it was so late on in the disease progression by the time I was diagnosed there wasn’t any thyroid left to destroy. I did not get copies of the first two tests which are the ones that mattered most. I should request a copy from the GP. I have a close relative that is hyperthyroid but don’t know anymore of the diagnosis bar that. Another has definite signs of what I had. Do you think it is the old idea that some researchers still believe, that Graves often burns out but then turns into hypothyroidism?

Hey GG, this is interesting. So you were converting and you didn't feel well on Levo, correct? Does it mean your labwork was looking good, but you did feel hypo?

Well, sometimes it looked good and sometimes it didn't. I do have Hashi's. But I wouldn't have said I felt hypo - although I was putting on weight at an accelerated rate, faster than before I started the levo! And even worse when I tried NDT! No, I just felt over-all unwell, not quite right, but no specific symptoms.

Yes, same here when I was on Levo only. Didn't see a difference when they put me on it in 2012, I was just still puffy, round, tired, top range ft4 low ft3. Then tried again last year, even worse. Better with t3, however, still symptomatic. Looks like I'm going on more t3 less t4!

I need to be on T3 only, and quite a high dose, at that: 75 mcg. I've tried on two occasions to add a little T4 in with it, but neither time could I stick if for very long.

Oh dear, t4 really isn't for everyone. More and more we see it here

Strange, isn't it.

It's almost like, body has a preference and once it tries it, it doesn't want the other thing!

My body didn't want T4 right from the start! But, on the other hand, I never took enough of it to give me the equivalent of 75 mcg T3, so maybe that was the problem. I just don't know.

Hi TSH110. Yes. If you have thyroid disease, especially autoimmune since there is no cure, your thyroid is usually done for. If you have Hashimoto's or Graves Disease you'll need thyroid replacement hormones your entire life.

Better off with no blood tests? Why? FT3 and FT4 levels have to be monitored on a regular basis (and no, once a year is no where near enough or considered a regular basis). Blood tests is how it's determined if medication dosage is effective or if an adjustment needs to be made.

The reason that NDT is better for some people is simple: NDT contains T3, not just T4. Many people need T3 in addition to T4. That is why if a patient is on only T4 and they switch to NDT, they often feel better. That is because they likely needed T3, not just T4. NDT is not for everyone and is certainly not for everyone with Hashi's or Graves (who become hypo and need thyroid hormones after they've received Graves treatment). NDT can cause an autoimmune reaction in some people, as well as some people react to fillers, antigens, or the pig thyroid found in NDT.

I have Hashimoto's. I tried NDT and it made me sick. I take synthetic bio-identical T3 and T4. It does not contain any bad fillers or antigens. It is "clean". (Always read all of the ingredients found in your thyroid medication. All formulations can be found online. Some synthetic bio-identical formulations contain fillers. Know your body and what you react negatively to.).

If you take NDT you do not really need any blood tests. It is not dirty medicine for me, it is very effective. Generally I don’t consider nature or its natural thyroid hormones to be unclean, but regard them as being rather sophisticated. People react to fillers etc in synthetic T4 as well (much discussed on this forum) so you can’t label that as exclusive to NDT. I was aware it can cause antibody rises but from what I have read the connection between them and actual symptoms is unclear (Dr Tania Smith) not that I believe it is something to aspire to. I understood T3 monotherapy was used for those for whom NDT was not suitable but I’m not sure when it became available as an alternative.

Found this interesting info on the matter:

google.co.uk/amp/s/thyroidp...

I just wonder if overall more people felt better on NDT then than feel well on T4 monotherapy now. I believe my musings on the matter might be correct. Obviously on an individual level that may not be so.

helvella
helvellaAdministrator
in reply to ShootingStars

Some synthetic bio-identical formulations contain fillers.

ALL synthetic formulations of T4 and/or T3 contain excipients (fillers). The quantities of T4 and/or T3 are so small they could not be handled if they did not.

(Just want to avoid people spending ages looking for an excipient-free product.)

All that euthyroid means is a normal state of thyroid function. Not hypothyroid and not hyperthyroid. That is all. That is the goal of effective replacement of thyroid hormones.

That was my understanding of euthyroid previously, but as Greygoose says if you don’t have a thyroid how can you be euthyroid? You can only be adequately medicated to alleviate the most symptoms of hypothyroidism possible for that individual, or at least that’s what I understood by her comment. I understood here it was impossible to be hyperthyroid if you are hypothyroid with no thyroid and on medication, even if it is too much medication - then you are just over medicated.

All that euthyroid is is a state of equilibrium or balance within the thyroid. There is an absence of hypothyroidism and there is absence of hyperthyroidism. The thyroid is in a state of equilibrium. That is all that euthyroid means. Another word to describe euthyroid is the thyroid levels needed for someone to achieve little or no thyroid disease symptoms is "optimal range".

There are no exact levels to measure to establish when a person is euthyroid.

"Well, actually, there are."

Where? Where can we find these exact euthyroid levels? What is being tested to determine if a patient qualifies for being euthyroid? Is there a difference between non-thyroid disease patient euthyroid and thyroid disease patient euthyroid?

The goal of thyroid hormone replacement is euthyroid: an absence of hypothyroidism, and an absence of hyperthyroidism. That is all. Dosage and the type of thyroid hormones (T4 and or T3) needed to achieve euthyroid varies per person. The measured levels of FT4 and FT3 needed to achieve a euthyroid differ per person. Optimal range basically means the same thing as euthyroid: it's the state of equilibrium within the thyroid where there are neither hypo or hyper symptoms.

I think you should read this article:

thyroidpatients.ca/2020/02/...

Big Pharma would sure sell a lot more thyroid medication if they would just come to the realization that some people’s pituitary gland does not work properly. It cannot produce adequate TSH, so TSH is low and they have low levels of thyroid hormone. If it’s all about money, sell these patients higher doses of thyroid hormone. Sell the patient T3 if they are not converting. Being stingy with the meds means selling less product and less padding of Big Pharma’s bottom line.

It would not matter how much thyroid hormone they sold, it could never make up for what they would lose on the loss of sales on their other drugs. There's not much profit in levo.

helvella
helvellaAdministrator
in reply to ShootingStars

Higher doses don't necessarily mean higher income.

In the UK scenario, going from 75 micrograms to 100 actually reduces the cost.

For at least some thyroid medicines, e.g. Tirosint, and Synthroid in Canada (examples that were easy to re-check), the price is the same regardless the dose.

You should be teaching them!! They’d soon get the message loud and clear 😉

I wish you could train GPs! Your analysis is so clear and helpful!

Fifteen
Fifteen
in reply to greygoose

Hi, mine was 0.02 in August and 0.01 in October. My GP is in a panic.

I decided to consult Prof John Wass at the Manor Hospital in Oxford. Hoping he will make sense of what is happening.

greygoose
greygoose
in reply to Fifteen

Your GP is in a panic because he doesn't know enough about thyroid. But, why do you think something is happening that needs making sense of? Have you had your FT4 and FT3 tested? Their levels would explain the TSH level, I should imagine. Are you taking thyroid hormone replacement? If so, what and how much? All the necessary information is avalable to your GP if he cares to look at it and use his common sense to analyse it.

crushing
crushing
in reply to greygoose

U say it doesn’t matter about where TSH is but FT3. What about ft4? My ft4 tends to be high while my ft3 is low to mid range. Would a high ft4 cause symptoms? Or should I more or less focus only on ft3 level and not worry about ft4?

greygoose
greygoose
in reply to crushing

If your FT4 is high and your FT3 low to mid-range, it means you aren't converting very well. And, in an ideal world, you would be prescribed T3 to go with your levo.

T4 is basically a storage hormone, it doesn't do very much on its own, and therefore doesn't cause much in the way of symptoms. T3 is the active hormone and is needed by every single cell in your body to function correctly. Therefore, if there's not enough to go round - or if there's too much - it can and will cause a wide variety of symptoms. That's why the FT3 is the most important number.

crushing
crushing
in reply to greygoose

Thanks

For me, the shakes indicated low adrenals - a problem I've had and self treated 3 times in the past 14 or so years.

I recommend the Genova Diagnostics adrenal saliva profile. It costs about 70 pounds IIRC. For practitioner, you put down Thyroid UK, and they will email your results to TUK who will then send them on to you [allow a couple of weeks].

This test will show you your DHEA and cortisol levels. If these are too high or too low [as in my case] then the thyroid mediation can't do its job properly.

As my DHEA levels were virtually flat lined on my last test of Dec 19, I am now supplementing with DHEA again. The difference in my health, stamina, [no] shakes, brain fog and general wellbeing is astounding. I feel I am becoming more human again.

In my experience, treating the adrenals is critical to allowing the thyroid meds to work for you properly. Any questions, feel free to ask :0)

All the best,

Helen

Thanks for the info Helen. I suspect that is my problem. I completed the regenerus saliva test this week and sent it back on Thursday via guaranteed next day (1pm) delivery. However the Royal Mail didn’t deliver on time and they will only arrive at the lab at the earliest today. It’s closed for the weekend so I assume I’ll have to redo them again! 😩. I can’t tell you how furious I was!!!

Oh that's so annoying. Since it was guaranteed delivery, can you write to the Royal Mail and request they cover the cost of a repeat test?

I phoned them yesterday and made a complaint. I don’t know what happens next. They said they’d reimburse my postage! Big deal! I told them I’d paid £87 for the test and almost £9 for the postage. Apparently it’s insured for up to £500 so I’ll just have to chase it now.

Keep chasing them - in writing. As I understand it [I'm no lawyer though] Royal Mail is obliged to cover the cost of your retest, as you sent it guaranteed next day and they didn't fulfil their side of the contract. Good luck!

TSH110
TSH110
in reply to Mickeydooley

If you did special delivery they should compensate you, but recorded is not insured. Sounds like you did special delivery, I imagine there will be a claim form. Make sure you have the receipt for proof.

Oh get cracking you only have 14 days to claim

This gives the clearest info about getting compensation to the value of what has been lost it’s down the page under Special delivery:

royalmail.com/retail-compen...

Good luck 🍀☘️🍀

Your symptoms could be from being over medicated. In my experience too much thyroid hormone causes the same symptoms as not enough-exhaustion, being cold, and shakes. Maybe you need to increase vitamin levels such as vitamin D, folate, and iron.

Thanks for your reply. My vitamin levels are good. My results wouldn’t indicate that I’m over medicated and my endo has told me he doesn’t think I am either.

vocalEK
vocalEK
in reply to Jkristina

If she were over-medicated, can you explain why this is not reflected in her results for Free T3 and Free T4?

You really don't want the Free T4 to be much over midrange. Aim for top 1/4 for Free T3. My guess is you may be having Reverse T3 problems. Until that is fixed, no amount of thyroid medication will make you feel better. It's typically caused by low iron and/or adrenal problems. I would test that and address that and the adrenal problems first, which will require more T3 and less T4.

restartmed.com/reverse-t3/

Hi Cincolo. There are numerous cause of RT3 problems. It's not just the RT3 result that maters. What matters is the results of your Reverse T3 Ratio (calculated with FT3 test ran at the same time as RT3. Simple calculation: FT3/RT3. The number should be over 20.). RT3 Ratio is the only way to determine for certain if there is a RT3 problem. The results of RT3 by itself don't mean much of anything unless your result is obviously high in range or over range, or obviously low in range, or under range. If the result of RT3 is somewhere in the middle of range, it might mistakenly be thought that RT3 is fine, when it might not be.

This is a reply about RT3 that I made on another post a couple of days ago:

Reverse Triiodothyronine (RT3) - RT3 is an inactive thyroid hormone. In excess or in poor ratio with current levels of T3, RT3 can bind with thyroid receptors. When this happens RT3 prevents T3 from getting into cells, which in turn lowers metabolism. Determining the cause of high RT3, or a bad RT3/FT3 Ratio (under 20) and why T3 is not getting into cells can help correct the problem. Low iron, low D3, low selenium, low zinc, low B12 and low B6 can cause poor RT3 Ratio. Also high antibodies (need to determine what is triggering antibodies to increase and remove that trigger), exposure to toxins (usually increases antibodies), illness (increases antibodies), stress (increases antibodies), leptin resistance, too high or too low cortisol, insulin resistance and diabetes, infections, and liver issues (thyroid hormone conversion happens mainly in the liver).

rT3 cannot prevent T3 getting into cells as the receptors are quite different. Both T3 and rT3 are converted to T2 very fast. Problems with deiodination can cause rT3 to hang around for too long instead of being converted to T2 - but it still doesn't block T3 - it can't. There are so many causes of high rT3 that it is really just a red herring unless you know you have a chronic disease or are eating a very low calorie diet when that is the more likely cause.

How long would the effects of a vlcd hang around? Unfortunately during a very stressful time recently I wasn’t eating very much due to a loss of appetite and just circumstances I found myself in. The stress levels have now eased and things are returning to normal along with the appetite thankfully.

I don't know, but I think it can be for quite a few months after "normal" eating has been resumed.

Thank you!

Having FT4 over mid range is not a problem. Optimal levels of FT4 and FT3 vary per person. If my FT4 was as low a being not much over mid range, I would have an increase in symptoms. This would occur even if my FT3 is maintained between 65-75%. My FT4 needs to be around 65% along with my FT3 being maintained, and then I have neither hypo or hypo symptoms.

Her levels of FT3 65% and FT4 32% do not reflect that she necessarily has a conversion problem, which is a sign of RT3 Ratio problems. Do you think that an RT3 Ratio problem could be masked by her supplementing 20 mcg liothyronine? Only testing RT3 at the same time as FT3 and then calculating the ratio would tell.

Thanks for the link. Very interesting!

Hi Mickeydooley. I replied above to Cincolo about the various problems that cause RT3 problems and how to calculate your RT3 Ratio, which is done in conjunction with FT3.

Thank you. I saw your reply. I’m just not sure where I go from here. I did have conversion problems hence the t3 treatment. I understood that it was quite normal for T3 levels to rise and T4 levels to fall on combination treatment. And TSH to be suppressed. And I have also read on this forum that there is little point in measuring rt3. I’m sorry but I’m not very well versed in all this. What do you recommend? I believe rt3 testing is very expensive and not worth the financial investment? Maybe it’s a bit OTT? I keep getting told that I’m obsessing about my condition. Maybe they’re right!

I know it’s a coincidence but I increased my levo to 100mcg today and took my usual split dose of t3 about 4 am this morning and I have experienced no shakes at all today. I know T4 takes time to work but I’m feeling better than I have done in a long time. (For now anyway!)

So you now take 100 mcg of T4-Levo & 20 mcg of T3-lio and you were taking 75 T4 & 20 T3 correct? If you had gotten the 100 mcg of T4 from your endo he would have lowered you t3 to 10 mcg T3. I took 88 mcg of T4 for 28 years until I felt the T4 wasn't converting and my endo lowered my T4 to 50 mcg with 30 mcg of T3. I asked to go up and he put me on 75 mcg of T4 and lowered the T3 to 20. Without telling him I began taking 100 mcg T4 and stayed with 20 mcg t3, knowing he would lower t3 to 10 mcg. I feel good at this level and know I'll have to B.S. my endo in order to get 20 T3 with a 100 t4 or just dose myself until I can talk him into it. Of course the T3 would be more expensive and the T4 almost free. What happened to me is the usual treatment. I had thought the T4 wasn't converting when it was but, for 28 years I took it and it was never lowered or raised: it should have been raised but never was & I realized I was now my own endo & have to dose myself until I find my own best levels. May peace be with you upon meeting & departing.

Mickeydooley
Mickeydooley
in reply to GKeith

I was diagnosed in 2007 after many years of trips to the gp with what I now know were hypo symptoms. The first records I received, after months on 50mcg levo showed a TSH of over 35 and extremely low T4. They increased my levo to 75mcg and I’ve been on that dose (despite reporting many hypo symptoms including hair loss, muscles aches, fatigue, IBS, feeling cold) until last August when in desperation I asked for a referral to an endo since the gp refused to increase my dose as my results were normal. Initially I was put on 10mcg t3 and levo reduced to 50mcg but results at next testing weren’t good so they increased to 20mcg t3 and then 75 levo. The endo wouldn’t increase my meds last visit even though I reported hypo symptoms, and he agreed I didn’t seem over replaced, because my tsh was suppressed. I took 100mcg for the first time yesterday and was planning to do alternate days to see if it helped. I’ll have some explaining to do when I go back but that’s not for another 3 months.

GKeith
GKeith
in reply to Mickeydooley

I have about the same story; only I was on 88 mcg of T4 for 28 years until I "crashed" in Europe when I ate no sugar and thought it was the T4, I got so many headaches I totally stopped taking T4 thinking IT was the problem. I was under-diagnosed and when I self-dosed for a couple months I found my optimum dose to be somewhere around 100 mcg of T4 and 20 or 25 of T3. My endo wants me to "start" on 100 mcg T4 and 10 mcg T3, si I will take that and self-dose the extra 10 mcg T3 until I can talk him into raising my T3, Peace be with you

It all depends on your pituitary gland. My TSH goes up when my FT4 goes up. No idea why. However TSH is always near bottom of range.

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