If you do not have an active thyroid, surely your TSH level will not change?

[jimjim]

I thought I had got my head round the Thyroid actions, but now I have got all confused again. I have no active Thyroid - (Radioactive Iodine Treatment killed it 3 years ago.) I am still up against the daily struggle of getting enough Thyroid replacement meds, since the doctors are so keen for 'someone of my age' (58!) to be on as low a dose as possible to protect against stressing my heart. Which is all well and good, but being seriously overweight and unable to shift it with little energy to exercise either, I say my heart is worse without a stronger dose!

After a lot of argument, I have had my vitamins done - first the B12 was v.low, so they gave me high doses and retested - then noticed Vit D very low, corrected that and now Folate is low so am taking extra of that - funny how they only tested each one individually, so it has taken 6 months to get back up to strength with them! I am hoping that all my vitamins are now up to scratch, I may start to feel some improvement but so far it hasn't made a huge difference.

My question about the TSH is that mine is very low - 0.17 (0.30 - 5.00) and my FT4 is 8.6pmol/L (7.0 - 20.0)

They will not test for T3 because only and Endo can order it (!!!) - I still feel that my FT4 should be higher but they say it is perfectly satisfactory! But if the TSH is for the purposes of STIMULATING my Thyroid to work - it won't because it can't therefore isn't it expected to be low?

If I have no thyroid working - would you think a daily dose of 75mcg Levothyroxine plus 25 mcg Liothyronine is a decent enough dose? I know everyone is different, but having looked at other people's reports, I feel mine is still too low.

Opinions please! Is there a chart with all the values of acceptable ranges for the normal blood test results anywhere too please? Thanks for reading - sorry if its a ramble! (My brain fog is better since I upped the T3 by another 5 mcg, but still a bit misty!) Jackie.

[Heloise]

stopthethyroidmadness.com/l...

This will give you an idea about blood levels. Odd that one of the most important ones is ferritin and they haven't tested for it?

You may be one of those who would do better NOT taking any Levo and just an optimal dose of T3. It's difficult when your doctors are ignorant.

[helvella Administrator]

TSH is produced in the pituitary based on how much thyroid hormone is in your bloodstream and how much TRH arrives from your hypothalamus.

It should continue to operate whether or not you have a thyroid. Whether or not any remaining thyroid is active.

However there is NO basis for putting TSH measurement ahead of actual hormone testing.

Further, if your B12 was that low, did they test your for intrinsic factor and gastric parietal cell antibodies? Did you get injections? Are you still taking B12?

There is every reason to think that too little thyroid hormone is, long term, bad for the heart.

Rod

[Jane104]

Taking T3 is likely to be suppressing your TSH. Without testing T3 your results (in my opinion) are nonsense. Your GP (or you can try asking whoever takes your blood to do this) should be writing on the form that you are taking Liothyronine and underlining that T3 test is required. Not sure why your T4 would be so low when you are also taking levothyroxine, but without the T3 result it's difficult to interpret.

[marram]

jimjim, what was the reason for the RAI? I had a TT for Graves' and recent research has suggested that if any Graves' antibodies remain in the system, they can fix onto receptors in the pituitary and suppress the TSH which would mean that the TSH is completely irrelevant for assessing the thyroid status of that individual.

hotthyroidology.com/editori...

Yes, Helvella, there is indeed, every reason to think that not enough thyroid hormone is bad for the heart. As you know, the result of reducing my thyroxine from 150 to 100mcg was soaring cholesterol, palpitations, mini-strokes and and an enlarged heart.

Marie XX

[shaws]

This is a link to Dr Lowe. It is archived so some links may not work.

web.archive.org/web/2010103...

[jimjim]

Hi All! Thanks for the responses so far! I had Radioactive treatment because my thyroid was swinging from low to high all the time, and I had high antibodies - that's as far as I remember, and of course I hadn't found this site before then, so never asked for the results, etc., and just did as I was told! It took 8 years of constant testing and complaining to get that far, mostly for Menopausal reasons which they blamed the whole thing on until the last 3 years when the Thyroid suddenly became a prospect - I am 100% sure it never even got considered until I found a little information on it on about year 5 of my quest to feel like a human being!

Obviously now I know a bit more I can see that the menopause could have been involved too, but that the Thyroid was the main culprit, but totally disregarded for so long. My next set of tests are due next week, once I have finished the latest course of Folic Acid, and I will also ensure I have not taken any meds until AFTER my test - something I have recently learnt would make a difference - up until the last lot of bloods, I would take my meds first thing, and within the next 2 hours trot off to get my tests - now I know not to take them until afterwards - so that may make a difference.

Unfortunately, our own Doctors are quite limited by the system here on what they can request. Seems they are only allowed to do the basics and only the Endo can ask for more than just TSH & Free T4. Interestingly, I have just found my 2009 test - TSH - 0.11 (LOW!) and FT410.2 (7.0 - 20.0) and Thyroid Peroxidase Antibod. lev - 216 ku/L (0-9) HIGH!!! So this was before my treatment, and it seems that my new tests are more or less the same on the treatment I am on!

I did find a note I had made somewhere that the Endo told me my T3 was 216 before treatment, and 128 another time, but this is just a sketch scribble I have down without details when I was trying to take notes on what he was saying. I have been 'signed off' and put onto the GP as 'satisfactorily managed' now.

[Hidden in reply to jimjim]

I've had radio iodine treatment too. I doubt that it's completely killed off your thyroid (it hasn't mine), which will now happily be doing its own thing. It may not be doing much. But that can change. Hormones are like that. Menopause and life trauma mimic thyroid troubles in some ways. Sometimes all three go hand in hand. :O(

I tried 'overdosing' on levo when I was first prescribed it and was putting loads of weight. Made no difference to the weight (which kept on coming), but I did get some palpitations. So go careful there.

Sympathies with your situation. Now you've got this website you know better what to ask for and about, and what to do with the information.

[jimjim]

Hi all! Thanks for the responses - it is just such a difficult thing - if the Doctors we are supposed to trust can't understand it properly - we are really up a gum tree! My temperature was always consistently low, even dropping to 34.8! I had to go and buy a proper thermometer because the digital one wouldn't go that low! I have to say it doesn't happen so often now - in fact since getting T3 I don't think it has done it that low, so I do feel an improvement. The weight gain is the worst, plus lack of energy - but I do not sleep properly - so I blame that mostly! We will struggle on - will post the new blood results in a fortnight once I finish my Folic Acid - fingers crossed we are getting there!

[Lcleveland]

Getting the right dosage is difficult for every person just keep talking to your doctor about how you feel, It's not about your numbers but it's about how you feel and finding a good balance. and know that it isn't just you we all have these issues, of trying to find the right balance. it takes about 6 weeks every time you get your meds changed for you to notice a difference and have new blood work done. so hang in there and keep working with your doctor, and when they tell you your numbers are good remind them that it's not about numbers it's about how you feel.