On behalf of my wife ...

[Bower123]

66 year old female, taking 200mcg of T3 daily between 0400 and 0500. If reduce dose, brain stops working! Recent morning temperature 36.2 and evening 35.7. She has Fibromyalgia.

Results herewith, any comments welcome please:

Thank you

[HealthStarDust]

So both Total and Free T4 below range and F3 above range with a below range TSH which is consistent with taking T3 only. I’d wait for an admin or others with more knowledge to come along and comment but it looks to me that she may benefit from adding T4.

Folate and Ferritin could do with improving.

[Bower123 in reply to HealthStarDust]

Thank you, I'll wait for others to comment also

[Hidden in reply to HealthStarDust]

Why would she necessarily benefit from T4? Dr. Lowe, a specialist on fybromyalgia, treated it with high doses of T3 only.

[HealthStarDust in reply to Hidden]

I am certainly no expert on thyroid or T3, which is why I added to wait for others to comment. My assumption is only based on a low T4 in hypothyroidism and it being more raised to feel better. Again, that is my assumption.

As for fibromyalgia, I shall refrain from adding my views about the condition since I am not of the view that it is disease in and of itself.

[greygoose in reply to Hidden]

She wouldn't necessarily. But she might.

Although First one should ask why she's on T3 only. In my case, it's due to me not being able to tolerate T4. Not even in NDT. It makes me feel very bad. I've been T3 only for many years - well over ten years, can't remember exactly. And, from time to time I do try to add in a little T4 but I'm always glad when I decide to give it up - it's like hitting your head on a brick wall, it's so nice when you stop!

That said, we're all different, and some people do need a certain amount of T4, even when on high doses of T3 - sometime a lot of T4, sometimes just a little. And, we have to find out what we need by trial and error.

I never refrain from saying what I think about fibro! It's a dustbin diagnosis used by doctors when they want to get rid of patients they cannot diagnose with anything else. Or those whose symptoms they don't understand - which is a pretty wide catchment area! But it's not a disease, it's a syndrome. You cannot diagnose someone with a syndrome. A syndrome is a bunch of symptoms. Symptoms have to be caused by something. If the patient is hypo, then there's a pretty good chance that if they are treated correctly, thos symptoms will go away.

Doctors are very fond of telling us that our hypo symptoms are 'nothing to do with our thyroid' and 'due to something else'. The day a doctor says 'your symptoms are nothing to do with your fibro, it must be something else', I shall open the large bottle of champagne I have in the fridge! But, I doubt it will ever happen.

So, her FT3 is over-range, but not as much over-range as one would expect on 200 mcg. (BTW, I was once on 225 mcg a day.) So, first question - there will doubless be others - how does she take her T3?

Oh, Second question: how does she do her testing? Is the blood draw 8 to 12 hours after her last dose of T3?

Of course, blood tests aren't awfully helpful when on T3 only. You know your TSH and FT4 are going to be very low/zero, and your FT3 will more than likely be high, depending on how much you take. So, going by symptoms is very important, with blood tests as confirmation.

We need what we need when it comes to thyroid hormones, and blood tests are only a rough guide. But, it is true to say that the brain does prefer to do it's own converting of T4 to T3. Some doctors say that T3 cannot cross the blood/brain barrier, but if that were true, those of us on t3 only would be zombies. So, some must get through. But, that is probably why T4 is important for some people. Just not for me!

Does she have any other symptoms when she tries to reduce her dose? Does she have any symptoms when she is on that dose? I imagine she must, or you wouldn't be telling us she has fibro.

Anyway, before asking any more questions, I'll wait for your replies.

[Hidden in reply to greygoose]

It would seem that a lot more women than men are affected by fibro. The same is true for thyroid disease. Which makes we wonder if there is a connection; if symptoms are in fact caused by low thyroid hormone levels, either undiagnosed or inadequately treated hypo (impaired T4 to T3 conversion or thyroid hormone resistance)?

[greygoose in reply to Hidden]

Well, I think you've answered your own question. If more women than men are hypo - diagnosed or undiagnosed - then more women than men are likely to be 'diagnosed' with fibro by lazy, ignorant doctors. So, the connection seems pretty clear to me. The bench test is: does the fibro improve/go away when the hypo is correctly treated. In most cases the answer would seem to be: yes.

[Hidden in reply to greygoose]

What has struck me over the years is how many hypo patients are also diagnosed with fibro...cannot be a coincidence. Almost all of them on levo with "optimal" lab results according to doctors.

[DippyDame in reply to Hidden]

Unfortunately most doctors are clueless about thyroid disease beyond the basics they are taught in med school.....they miss the red flags!

[Hidden in reply to DippyDame]

I wonder what those basics are, since many doctors don´t even seem to know what T3 is...?

[greygoose in reply to Hidden]

It probably starts off something like 'the thyroid is a butterful-shaped gland in your neck...' and doesn't go much further than that.

[DippyDame in reply to Hidden]

Ah, but...T3 isn't basic as far as medics are concerned...they barely understand T4, and they are told about TSH... but have difficulty using that pituitary hormone lab along with the labs of the two free thyroid hormones to diagnose thyroid disease.

It beggars belief!

As greygoose says below...

[Lottyplum in reply to Hidden]

How can you have confidence in a Dr who thinks T3 is irrelevant as mine said to me?

[greygoose in reply to Hidden]

Yes, many many hypo patients are also diagnosed with fibro, and for a very good reason: doctors do not understand - or know - hypo symptoms. They are not taught about symptoms in med school. They do not know that thyroid hormone - T3 - is needed by every single cell in the body, so that if there is not enough to go round those millions of cells, symptoms can occur anywhere and everywhere.

So, when the doctor has increased the dose enough to get the numbers back into range - anywhere withint the range

- and remember, most of them only test, and only 'know' about TSH - they consider it to be optimal, and therefore believe the patient should be symptom-free.

So, when the patient continues to complain of symptoms, they refuse to believe the symptoms can be thyroid-related and say 'it must be due to something else'. So, they do a few tests and can't find anything. However, there are a few things you can't test for, so nobody can prove if you have it or not, namely: CFS/ME and fibro. So, they 'diagnose' the patient with one of those and consider their job to be done. Because, from then on, whatever the patient complains of, it can be blamed on the fibro, etc. and there are no tests to be done and no treatment to be given, so the doctor can just say go away and learn to live with it! And the patient will never be taken seriously again. So convenient!

[Hidden in reply to greygoose]

That is very true, and very sad. Makes me feel so sorry for all the thyroid patients who suffer tremendously due to incompetent doctors.

[greygoose in reply to Hidden]

Which is most patients, as far as I can see.

[HealthStarDust in reply to greygoose]

“I never refrain from saying what I think about fibro! It's a dustbin diagnosis used by doctors when they want to get rid of patients they cannot diagnose with anything else.”

I couldn’t bring myself to write this, but totally agree. And thanks for explaining difference between syndrome and disease.

Your no nonsense always make me chuckle!

[greygoose in reply to HealthStarDust]

Thank you. I love making people laugh!

[HealthStarDust in reply to greygoose]

Oh no! Thank you. It’s great being on a forum where my thoughts on CFS, FND etc are echoed.

Best 🤗

[JoJoloveschocolate in reply to greygoose]

“Doctors are very fond of telling us that our hypo symptoms are 'nothing to do with our thyroid' and 'due to something else'. The day a doctor says 'your symptoms are nothing to do with your fibro, it must be something else', I shall open the large bottle of champagne I have in the fridge! But, I doubt it will ever happen.”

I was diagnosed with Fibro and Cfs a few years ago even though everything I read about my symptoms and the way I was feeling pointed to being hypo, but the results were not out of range then. This year I found elevated tsh and low in range t4 on private testing. The tests were repeated by my gp and I started a trial of levothyroxine. After a few weeks of feeling well when the t4 went up, I felt ill again. Had blood tests that showed the t4 had fallen again. The Gp reluctantly increased my dose feom 50 to 75mcg and said “I agree to a small increase, but thyroxine may not be the answer. It might be something else”…even though a whole host of other blood tests were fine and the only thing that showed a real problem was the tft and my symptoms. Despite all the results there right in front of him, he was still trying to fob me off and convince me that I didn’t have a thyroid problem, although he wouldn’t actually say what this other mystery illness could be. Madness…

[greygoose in reply to JoJoloveschocolate]

Yup. Typical! When a doctor once told me my symptoms were due to 'something else', not thyroid, I asked 'like what'. He shrugged his shoulders and said - I kid you not - 'How should I know'! The red mist descended and I said 'bloody-well find out then! You're supposed to be the doctor!' But, he never made any move in that direction. What is so galling is that they would never behave like that with any other type of illness.

[JoJoloveschocolate in reply to greygoose]

It’s bizarre isn’t it. I got the impression my doctor was trying to frighten me…or perhaps suggest hypochondria or that I might be losing my mind. The problem is because I have the CFS/fibro label I actually think that’s how most people interpret that diagnosis so everyone thinks they are dealing with a hysterical time-waster or someone who imagines it all and don’t take me seriously now. Honestly, I feel sometimes as if my gp has been told not to diagnose any thyroid problems!

[greygoose in reply to JoJoloveschocolate]

I think you're probably right! It certainly seems that way.

[SlowDragon Administrator]

will flag for greygoose and DippyDame to comment as they also take T3 only

[Pearlteapot]

Your wife's cortisol levels at 236 are very low. The Nice Guidelines say below 500 should be referred to endocrinology for further investigations of adrenal function. cks.nice.org.uk/topics/addi...

I have read other guidelines that say below 400 should be referred. Either way, her levels should be investigated.

If she has poor adrenal function, which is very likely, the high levels of T3 that she is taking will create greater stress on the adrenals as they seek to produce enough cortisol for the increase in metabolism. So she could feel really tired due to low cortisol, regardless of how much T3 she takes.

You could search in here for posts about how people treat low cortisol levels.

[DippyDame]

I too was diagnosed with FM over 20 years ago but never really accepted it as the cause of my debilitating symptoms.....it wasn't!

I was diagnosed as hypo around the same time....I had to request a thyroid test and back then they still tested FT3!

20 + years later and feeling a wreck I started "digging" and discovered that I have a form of Thyroid Hormone Resistance/RTH and need a supraphysiological dose of T3 to allow me to function. It's all in my bio should you both be interested

The following might help

healthrising.org/blog/2019/...

********

frontiersin.org/articles/10...

Higher Prevalence of “Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study

Your wife's results are consistent with a dose of 200mcg T3

My maximum dose was 212.5mcg.....now much reduced!

It is the cellular level of T3 that counts but there are no blood tests to check this so we must rely on clinical evaluation/ signs and symptoms as was done before testing existed....Resting heart rate, heart rhythm, basal temp, hand tremors and so on.

The brain needs a huge amount of T3 so her dose is likely fine from what you say.

It sounds as if she has a form of RTH, put basically a large dose is required to act as a battering ram against the cells so that at least some of the dose enters the cells, reaches the nuclei of the cells and attaches to the T3 receptors which transport the hormone throughout the body.

Any remaining T3 that has failed to reach the nuclei remains inactive is metabolised and excreted from the body.

The aim is to get the smallest amount of T3 necessary into the cells....not to take as much as we can tolerate. It's basically trial and error!

If we listen to our body it will soon tell us if something is wrong!

When my cellular T3 was very low I could not read and retain what I'd just read by the time I reached the bottom of a page! I'm at least 90% there now, and I'm aged 78...so never too late!

I hope your wife keeps well and that the above rant might be of some help!

[penny]

As the aforementioned wife, I thank you. I had my account restricted about two years ago for mentioning the unmentionable. I have promised to be a good girl.

So, Pearlteapot thinks that I should see a doc about my low adrenal function; I can try but my last interaction with a GP on matters thyroid was to be told to keep buying the pills privately and keep him out of it. I do and have done. The best one was, after being prescribed NDT, T4 and T3, I was told that, after all, I was not hypothyroid.

I have just started taking Thorne adrenal support, at the moment only 1 tablet.

I have not been diagnosed with FM, just told this by a physio many years ago. I have constant full-body pain, weak and stiff muscles. I do not need painkillers and am not particularly tired. Active outside looking after garden and chicken.

As to B12, I have just ordered some more as recommended with folate; I was taking a B complex about once week. I have some iron tablets, do you think that I would benefit from taking some? I’m pleased that my CRP is not too bad.

I take: Vit D3, 4,000iu in summer and 8,000iu in winter; Vit C 2gm; zinc; quercitin; curcumin; cranberry; l-Argenine; lysine; berberine; k2; magnesium; intermittent Bs. Not much room left for food! I do time-restricted eating and eat within a 6 hour window.

I appreciate opinions.

[Bower123]

Many thanks to everybody who has responded to my initial request on behalf of my wife. She has read your responses and asked me to thank you.