Both Endo and GP think my test results are perfect but I feel rubbish.

[Charltonjl]

I've decided to try T3 with my current 50mg dose of Levothyroxine. My endo and GP aren't helping and I still feel awful so I have purchased it myself (I have previously posted my results on here). Can I please have some tips whilst taking T3. Eg. Dosage, timing(s), possible side effects, could it help my weight etc? I have recently been on a low calorie diet but weight loss has stopped so am a bit worried about RT3 too. I am a 41 year old woman and now have a BMI of 23.9. Thanks

[greygoose]

As with all hormones, you start low and increase slowly. With T3 that means starting on 1/4 pill, and increasing by 1/4 every two weeks until you get to one whole pill. Hold for six weeks and retest.

But, I can't help feeling you're a bit premature with adding in T3. Your last labs suggested under-medication with levo, so you didn't have that much T4 to convert to T3.

Why are you worried about rT3? What do you think it's going to do to you? There are many, many reasons for high rT3, and only one of them has anything to do with thyroid. And, your FT4 is too low to be causing high rT3. In any case, high rT3 does not cause symptoms.

[Charltonjl in reply to greygoose]

I am lost as to what to do. My GP refuses to increase my Levothyroxine. I was then referred to an endocrinologist (from the Thyroid UKs list) and he also said my dose of Levothyroxine is fine as my bloods 'are perfect'. Both GP and endo said I have optimal results and will not increase my levo dose so I don't know how I would get it increased, hence me adding t3 myself. I thought high RT3 causes hypo symptoms? I haven't had mine tested but have been on a high calorie restricted diet for 10 weeks now and my weight loss has suddenly stopped and my hypo symptoms worsened. I've read low calorie diets can increase RT3 which isn't good for us? Thanks for the advise on the T3 meds xx

[greygoose in reply to Charltonjl]

Well, you could buy your own levo, just as you've bought your own T3.

No, rT3 is inert, it doesn't cause symptoms. And, it only stays in the body for a couple of hours before it is converted to T2. But, you are correct in saying that low calorie diets can increase rT3. And, it's not the high rT3 that is bad for you, but the low calorie diet! That will reduce your conversion of T4 to T3 - you need calories to convert!

Dieting is not recommended for hypos, anyway. For that reason, but also because they will affect your nutrient levels. Hypos have problems digesting and aborbing nutrients as it is, but if you don't eat enough, the problem will be even worse. And, you do need optimal levels of vit D, vit B12, folate and ferritin for the body to be able to use thyroid hormone correctly. Have you had those tested?

Also, hypo weight-gain is not normally fat. It's water-weight. And, no amount of dieting is going to get rid of that. So, rather than going on a low-calorie diet I would be looking to increase my food intake to improve my conversion and optimising my FT3.

[Charltonjl in reply to greygoose]

Thanks again for responding! :))) I've been on the Cambridge Diet which includes people's ideal daily nutritional needs within the products (apparently) and am almost at my ideal weight (mainly baby weight but I never have a problem losing weight as a quite small... until recently). I lost 21 pounds in 9 weeks and only have 6 pounds to lose but it's stagnated of late. I will stop the diet once I reach my pre-pregnancy weight! My Vit B12, folate and ferritin all seem to be in range and Vit D has improved since taking 5000iu a day but not ideal still so I've increased it to 9000iu a day for a while. I haven't since retested but my symptoms are still there I would feel aggrieved to buy my own levo just because my docs are being stubborn and archaic so wanted to try T3. Thank you x

[greygoose in reply to Charltonjl]

Thanks again for responding! :))) I've been on the Cambridge Diet which includes people's ideal daily nutritional needs within the products

For a euthyroid person, they probably do. But, you are hypo, which changes everything.

am almost at my ideal weight (mainly baby weight but I never have a problem losing weight as a quite small... until recently). I lost 21 pounds in 9 weeks and only have 6 pounds to lose but it's stagnated of late. I will stop the diet once I reach my pre-pregnancy weight!

And, in the meantime, make yourself more hypo which will cause you to retain more water and put on even more weight. OK

My Vit B12, folate and ferritin all seem to be in range

Just being 'in-range' is not the same as being optimal. Is your B12 over 550 - assuming you did the serum test? Your folate over mid-range? And your ferritin around 100 (depending on the range, of course)?

[Charltonjl in reply to greygoose]

Hello, thanks again!

Here my recent (September 30th) blood results:

My B12 (active) is >150 pmol (range >37.5)

My ferritin is >94.8 (range 13-150)

My folate is 19.8 (range >3.89)

My test results from 5 months ago however had my B12 level at 800pmol/l.

Neither my doctor, specialist or endo negatively commented on these test results?

Regarding the weight, oddly this diet has made me feel slightly better if anything especially my endometriosis and PCOS symptoms... but I still have my previous hypo symptoms ie. Hair loss, brain fog, exhaustion, carpal and cubital tunnel and feet pain etc. I've always been small (pre-pregnancy and developed hypothyroidism during my pregnancy last year) so once I get to my ideal weight (hopefully in a few weeks) I'll stop the diet. I'm hoping all the weight won't rush back on because I'm naturally small. Just noticed I'd put on a lot of weight after giving birth this year along with the other horrible symptoms and wasn't losing pre this diet.

Thank you :)x

[greygoose in reply to Charltonjl]

Neither my doctor, specialist or endo negatively commented on these test results?

Well, they wouldn't. Doctors know nothing about nutrients. But, those results do look good.

[Charltonjl in reply to greygoose]

Thank you for confirming 😊

[shaws Administrator]

Your dose at 50mcg seems too low to me and you should have small increases after each blood test to bring TSH to around 1 or lower. Unfortunately it seems as if those who should know better only look at the TSH and don't test FT4 and FT3. They also believe if TSH is 'somewhere' in range that we're on an adequate dose. We're not if we are symptomatic. We're supposed to be free of clinical symptoms when we reach an optimum dose (which means we feel well withno symptoms) .

I have always taken my dose of thyroid hormones, whether it was NDT, T3, or T4/T3 together once daily.

I lead a normal life whereas it we split this has to be for a lifetime as we cannot stop taking replacement thyroid hormones.

The following link is by Dr John Lowe who was a scientist/researcher/doctor and an expert in the use of T3. He was also an Adviser to Thyroiduk.org.uk before his accidental death.

tpauk.com/main/article/the-...

[Charltonjl in reply to shaws]

Thank you, I will take a read I just replied to Grey Goose saying that both my GP and endo have said my results are perfect and neither will increase my dose of Levothyroxine. My endo is going to do more tests around my nerves to try and determine why I keep getting carpal and cubital tunnel syndrome but I still suffer from other hypo symptoms and he flatly believes it's not related to my thyroids (hair loss, brain fog, extreme fatigue etc). It's just upsetting that I seem to be fighting a losing battle, hence, me taking it into my own hands and adding t3 myself xx

[shaws Administrator in reply to Charltonjl]

I cannot understand these doctors who appear not to listen to their patients.

The word 'perfect' would mean that the patient is well and symptom-free.

Unfortunately, to the professionals it just means 'it is somewhere in range'. The results are assumed to be perfect but they've ignored that there is a patient who is symptomatic and needs sufficient thyroid hormones to relieve all of their symptoms.

How can they possibly know the 'feelings of their patients'?

Ignorance is not bliss and it is their patients who suffer with clinical symptoms which they should have the knowledge to relieve.

That's why we have so many members and those who're knowledgeable are far better than any medically qualified person.

I believe also that their 'organisations' lay down the law of what can be prescribed and doctors who don't follow may lose their Licence.

We were also prescribed levothyroxine (T4), liothronine (T3) or, 'natural dessicated thyroid hormones' (NDT) The latter two now banned.

If you'd like to Join Thyroiduk.org.uk who do stellar work behind the scenes the stronger we become.

thyroiduk.org/help-support/...

[Charltonjl in reply to shaws]

Thank you for understanding. It's just not fair :(. I even asked for more Levothyroxine after replies to previous posts on here and was completely rejected by my GP and now my endo. But thanks for your reply. I will certainly join :)))

[shaws Administrator in reply to Charltonjl]

All of our knowledgeable/helpful/understanding doctors have now retired or lost their licences as they didn't "toe the line".

I find it surprising that there is more rubbish being stated (also from my own GP) and that these people 'treat' those who have problems with their thyroid gland.

It is no wonder that people try to source their own thyroid hormone replacements.

[Charltonjl in reply to shaws]

It's unbelievable and frustrating and not fair for anyone going through this

[m7-cola in reply to shaws]

I wholeheartedly agree with you. I feel so mad at reports of doctors who ‘go by numbers’ instead of listening to their patients. Imagine someone cooking who merely ‘went by numbers’ and burnt their meal to a cinder to comply with the ‘instructions’.

[Charltonjl in reply to m7-cola]

Exactly! Thank you x

[shaws Administrator in reply to m7-cola]

The medical professionals take more notice of blood tests and if they're somewhere in range assume we're on a sufficient dose. They completely fail to ask the patient 'how do you feel'. The assumption is that the patient is on a sufficient dose.

Next time, take with you a list of your clinical symptoms and say to GP, "these are the symptoms I still have and they aren't resolving and I understand that's what the medication has to do and that small increases in levo might do the trick".

The TSH should be 1 or lower (not somewhere in range).

This is a list:

thyroiduk.org/signs-symptom...

Charltonjl

[Charltonjl in reply to shaws]

Thank you. I did exactly that Mentioned all my symptoms to just be shot down by both my GP and endo saying that something else is causing my symptoms and that it can't be my thyroid as my levels are perfect. That's when I asked my GP for a referral but endo said the same anyway. But he will look into my nerves to address my carpal and cubital tunnel syndrome at least. But says it's nothing to do with my thyroids (or any of my other symptoms) :(. Very very frustrating! X

[shaws Administrator in reply to Charltonjl]

They are covering up because they do not know any clinical symptoms and just look at a TSH result.

Join Thyroiduk.org.uk as a member and tell them next time that you've had advice from TUK.

Lyn Mynott of Thyroiduk has also met with The Lords to try to change attitudes you've come up against. The responses you've had would make me think if we 'do it ourselves' with advice from many members that may be better than from those 'supposed to be professionals'

[Charltonjl in reply to shaws]

Thank you so much. I definitely will x