2019 - TFH - 0.02 Range (0.27 - 4.20). T4 - 20.3 Range (12-22) no change to 175mg
6/3/20 - TFH - 0.02 T4 - 24.6 ( Ranges as above) DR reduced levothyroxin by 25mg to 150 mg
5/2/21 - TFH - 0.1. T4 20.5 ( Ranges as above) want a repeat test in 3 months which is booked for 10/5/21.
They have tested a fasting glucose and blood sugars all normal and they say I have idiopathic postprandial syndrome which is causing my body to get flushed, shakey, clamminess etc.
However, I’m still not feeling right tired, lethargic, the inner parts of my eyebrows are thinning and despite moisturising my legs they are dry scaly and flaking, especially the left one ( sorry if that 🤢). I’m not even mentioning my nails 🤫☹️.
I would be appreciate if someone could give me insight into those tests results please . Many thanks.
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Hamer5
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Well, they don't really tell you much at all. What you need is the FT3 tested. That is the most important number. TSH and FT4 can tell you if you're under-medicated, but cannot tell you if you're over-medicated or on the right dose. This is where doctors get it all wrong, and keep their patients sick.
I'm guessing that you're not converting all that T4 to T3 very well. But, you can only tell that from testing the FT4 and FT3 at the same time. If your FT3 is low, due to poor conversion, that would be what is causing all your symptoms.
Have you had your antibodies tested, do you know if you have Hashi's? How about your nutrients?
Hi thanks for replying and Apollo for typo TSH 🙇♀️. I’ve had my antibodies done and was diagnosed with autoimmune thyroiditis, this was after months of going to doctor feeling very unwell and sleeping all the time. It was a new GP that suggested an antibodies test following a within normal range thyroid TSH and T4 test.
No they referred me to the endocrinologist at the hospital, they did a scan of my thyroid ( it was gravelly) whatever that means. Started me on thyroxine gradually increasing dose until I got to 175 mg. I then started to feel unwell ( tender breasts, secreting milk, dull headache, brown spot skin disclouring appeared on my forehead and very tired) had bloods taken and apparently my prolactin levels were in excess of 1550 in one and over 2000 in another ( apologies this is vague ) I was referred for an MRI which indicated nothing, on returning to the Endo my levels were back to normal and he had no explanation as to why this randomly happened. I just want to feel alive again and not constantly tired like I’ve been unplugged.
OK, so Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid. It is diagnosed by testing Thyroid Peroxidase (TPO) antibodies and Thyroglobulin (Tg) antibodies.
Contrary to popular belief, it is not the TPO/Tg antibodies themselves that attack the thyroid:
"When lymphocytes infiltrate the thyroid gland, mistakenly taking it for a foreign bacteria invader, they damage the thyroid gland and release thyroid peroxidase &/or thyroglobulin into the blood stream. These don't belong outside of the thyroid gland so antibodies are developed to mop them up.
The antibodies are a result of the attack on the thyroid gland, the antibodies don't cause the attack."
After every immune system attack on the thyroid, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 to around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.
There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.
(NB: A Hashi's 'hyper' swing is not true hyperthyroidism in that your thyroid is over-producing thyroid hormone. It's physically impossible to 'go hyper' if you are basically hypo. The thyroid cannot regenerate itself to the point of over production of hormones - or even normal production. Very few doctors appear to know that.)
Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.
There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course!
However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.
But, there are things the patient can try for him/herself to help them feel a bit better:
a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better. Worth a try. Some say that going gluten-free will reduce antibodies – I’ve never seen conclusive proof of that, but, you should be aware that even if you were to get rid of the antibodies completely, you would still have Hashi's, because the antibodies are not the disease. It is not the TPO/Tg antibodies that do the attacking.
b) take selenium. This is not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.
c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified of a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, which also stimulates the immune system to attack. So, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.
This may be a silly question but when you refer to the hashi flare would tha5 be the reason why each time I feel like this eg weight gain , tiredness etc wha5 initially precipitated was a period of weight loss like I was going hyper and then my doctor reduces my thyroxine 🤷♀️
I think that's pretty much it, yes. They just don't understand about these 'hyper' swings and automatically thing the dose must be too high. Not logic to their thinking!
Thank you, I told them about this happening before and I gained a lot of weight. In 2019 I was losing weight again I had more energy etc they reduced my thyroxine! 2021 I’ve gained the 5 stone plus again despite continuing exercise eating was no different the doctor said I needed to watch my weight as my cholesterol had gone up and my ferritin levels were raised indicating a fatty liver . I said this happens when you change my levels then they made reference to being hyper and weight loss, but I felt better then. 😖
Lord help the doctor that made any reference to my weight in connection to my cholesterol level!!! It has nothing to do with how much you weigh. What high cholesterol means is low FT3, and that is their fault, not yours!
Well I was given a sheet and told to watch what I eat cut out butter, cheese, cream cakes etc . I told them I don’t eat those things I eat very little dairy apart from fat free Greek yoghurt ... despite following that programme , continuing my spin classses ( when I said I did exercise, eyes were rolled as if I was lying) I have gained weight! I have to get my cholesterol done again in a few weeks and Im dreading it. I felt humiliated but I have nothing to gain by lying . I just want to get back to where I was 😊.. thank you so much for your help and knowledge.
They are just showing their ignorance. High cholesterol has nothing to do with cream cakes - I wish it did! Becuse mine is too low. Cholesterol is made in the liver, and the liver tries to keep a steady level. So, the more cholesterol you consume - and that does not mean consuming fat, because fat and cholestrol are two entirely different substnces - the more you consume, the less the liver makes. The less you consume, the more the liver makes.
The problem arises when T3 is low. Without adequate levels of T3, the body cannot process and eliminate cholesterol correctly, so it tends to mount up in the blood. However, cholesterol does not cause heart attacks or strokes. The high levels you get with hypothyroidism are not dangerous, so don't let them nag you into taking statins!
Thank you for that information, because he mentioned about statins if it didn’t come down.. 🙇♀️ Hence me being somewhat apprehensive about going again. Is the best approach for him to recommend increasing my dose ... I’d rather be a bit more aware of what I should do or at least suggest to him if he dismisses the thyroid and pushes for statins if you get me
Can I ask another question, what would you consider is the optimum time t9 take the thyroxine eg morning one hour before food or night to work while you sleep
Whichever suits you best. As long as you take it on an empty stomach, and wait at least one hour before eating, etc. it doesn't matter when you take it.
No, increasing your dose of levo is not the answer. Your FT4 is already quite high enough. What you need to do now, is find out how well you are converting by testing your FT4 and FT3 at the same time. Your doctor probably won't do that - won't even understand why! - so if you could, it would be a good idea to get private tests.
But, even if he does try pushing statins, you don't have to take them. You can refuse. He is there to advise you, not to dictate to you and force you to take drugs you don't want to take. Just say no.
Do you know where I could get private tests? I’m going to get a phone call from another doctor, she is hard to get but she will listen to how your feeling and maybe will order tests.. I’m more concerned about what the are going to do eg if I’m not covert ing well
They probably won't do anything if you're not converting well. I don't suppose they know anything about conversion.
If it turns out you do have a conversion problem, the first thing to do is test your nutrients - in fact, it's a good idea to do them anyway: vit D, vit B12, folate, ferritin. Poor conversion can be due to low nutrients. But, also to a lot of other things. Low-calorie diets, for example. So, are you eating enough?
But, take things one step at a time and don't try to get a head of yourself, serves no useful purpose. Get the tests done first.
Never agreed to dose reduction based just on TSH and Ft4
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
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