How soon then how regularly after TT should bloods be tested

[lollybif]

Had a total TT two and a half weeks ago and am feeling awful on 150mg thyroxine (100mg pre op). Not due for my post op review with my endo until 26th June. Should I be asking for my levels to be tested earlier by my GP. What is everyone else's experience of post TT bloods?

[Piedo]

Hi I had TT a year ago and was told that once I was on thyroxine I would feel fine. not so.I felt really weak for about 4 weeks. You will need to wait 6 weeks post op before testing again but it takes. Quite a while for levels to settle.I have now discovered a year down line that I have low T3 levels no wonder that I ache all over.but that's another story.I think it will take you 2 to3 months to feel reasonable also be prepared for your neck feeling tender for quite a while

Piedo

[vajra]

My personal experience (in Ireland in 2005) is that it's not necessarily a very satisfactory situation L - that the stock handling of the scenario seems to take little or no account of how the patient feels.

That it's seemingly deemed unrealistic to try to optimise the replacement dose based on symptoms in the weeks post op, and that a 'safe' low dose may be prescribed as a holding measure. Which may leave one feeling very unwell.

This situation (judging by my experience) may be compounded by the inability of some patients to properly use even a marginal amount of the T4 due to previously impaired but undiagnosed T4 - T3 conversion.

i.e. The thyroid may have been producing a reasonable amount of T3 up to this point, but once removed the patient is left 100% dependent on their (potentially minimal) downstream ability to convert this synthetic T4 to the required T3.

Meaning that there's the possibility of being hit by a double whammy - the effects of the low maintenance/interim dose of replacement hormone, AND the effect of being unable to convert it to T3 and use it.

I was already very hypo before my TT for a cancer in a Dublin teaching hospital in 2005 - which was done in two stages - a partial, followed by completion some months later.

My experience was that the endo responsible (an old guy handling public patients on the verge of retirement - never mind that he was a professor) wasn't interested in how i felt.

He wouldn't even discuss the use of T3 - seemed to be wedded to the stock T4/TSH protocol.

I was as above put on a (low) maintenance dose of T4 after the partial TT pending blood work and a further consultation - potentially months ahead. Justified as in your case by needing to wait for the situation to stabilise. I was assured that the remainder of my thyroid would take up the slack anyway.

For whatever reason it didn't, and within a few weeks i was feeling awful - even more hypo than before the TT.

Nothing i said made any difference. In desperation i got an appointment with Dr. Skinner and dragged myself to the UK. He took one look at me, pointed out a string of visual indications suggesting that I was severely hypo, and immediately doubled my dose of T4 pending a proper work up.

Which helped a bit, but didn't do the business - I'd been hypo for may years pre TT as a result of what seems to have been the typical impaired conversion of T4 to T3, but had been unable to get a doctor to buy into this possibility. A succession of 'normal' T4/TSH blood tests didn't detect the issue.

The option of a private appointment with a new and much more progressive endo surfaced just after i got home. He was persuaded to trial 10mcg of T3 with the extra T4 which produced instant results. Upping it to 20mcg produced something not quite but close to normality - and while the proportion of T3 has since been upped again and delivered a further improvement the rest is history.

Pardon the length, but i guess i'm suggesting that (a) endos won't necessarily seek to optimise replacement post TT to get you feeling well, and (b) that with removal of the thyroid legacy issues such as poor T4 to T3 conversion issues may also kick in.

ian

[lollybif in reply to vajra]

Thanks for the comprehensive reply. I will make sure I follow up on the T3 level as well if things aren't showing any sign of improvement. TT was for unstable Hashimotos but did have periods of wellness pre op so hope to return to this. My Endo is a past president of the British Endo and Thyroid Surgeons and has been very supportive so hope this continues.

[vajra]

No prob L, that was just my experience.

One to bear in mind is that (based on reports from others, and on my experience) Hashimotos seems to increase the likelihood that auto immune issues/the presence of antibodies may interfere with the conversion of T4 to T3. Perhaps upping the likelihood that you will need some T3.

There's more. Papers like this suggest that in the natural state (with a thyroid) the thyroid directly produces quantities of T3 anyway. Meaning that post TT we're asking our system to take on the task of producing all of our T3 by conversion from T4 - something which it seems not to normally do. Which probably explains it's identification of the need for TSH suppressing levels of T4 or replacement T3 to be included with T4 to normalise blood T3 levels (bearing in mind that correct blood T3 levels seem to determine whether or not the repalcement is effective) - especially post thyroidectomy.

My personal view is that it's best not to let this stuff drag on if you are feeling unwell - in that over time various processes run down and deficiencies develop which can be hard to reverse...

ian

[vajra]

PS 'producing all of our T3 by conversion from T4 ' I meant from replacement/synthetic T4 taken orally....

ian

[lollybif in reply to vajra]

You sound so very knowledgable on the subject. Have spoken to hosp today and they have arranged for me to see my Endo next week and to get bloods taken by GP. I think i am riight in thinking that my TSH should be less than 1 and ideally less that 0.5 but what about free T4 and T3?

[vajra]

HI L. Ta for the compliment, but I'm no expert, and hence not able to advise - just a dabbler with some hard won experience of what has helped me. So don't read too much into what i say.

It's hard to be specific on blood values, as TBH (what with professional dogma and the gaps between the theory and the practice in thyroid replacement) i've more or less given up on them and go mostly by symptoms and how i feel. If it feels like a change might be worthwhile i try to persuade my endo to agree, or try to somehow make it happen anyway.

My impression is that time and again it turns out that the body is the honest messenger on these matters - insofar as if it leaves us feeling right in the longer term then the chances are that it's OK.

Take a dig around the site. There's a thread just now linking a UK paper that (finally) has decided that the low (as opposed to negligible) TSH values many have long suggested leave many patients feeling better are not harmful.

Lots of links to sources of information too. Thyroid replacement seems to be one area of medicine where there really isn't any subsitute for getting up to speed on the topic to be able to play a pro-active role in getting sorted out.

Most seem to do better in the sort of space you mention, but bear in mind that (a) we seem to vary quite a bit in terms of the blood values that feel best, and (b) that conversion issues may mean that despite taking enough T4 to deliver a low TSH it's possible not to be adequately supplied with T3 at the cellular level. (there's a thread on the deiodinase enzyme processes involved in cellular level use of hormone up right now too)

Free T3 seems to be an important test for this reason. Best blood values for wellness again seem to vary, and different labs use different measures - but it seems like it may be best to be at least in the higher end of the range specified by most of them.

If conversion and activation are issues then it seems (as in my own experience) that it may require taking T3 as well as the usual T4 to achieve this.

Please take some time to read up the topic here and elsewhere - it's not a simple one and even if all of the blood thyroid hormone levels are good there do seem to be other reasons (e.g. adrenal weakness, auto immune activity, toxicity, other diseases and the like) why we may find we're still not feeling well.

ian

[lollybif in reply to vajra]

Thanks again for your really helpful advice. am trying to get up to speed but it's a complicated subject!

[Hidden in reply to lollybif]

Hi I agree with all the previous poster has said, finding a doctor who gives a crap about how you feel is rare. Also for TT patients in particular, how you 'feel' seems to have little to do with blood tests really. And there is a whole seething cauldron of debate about blood parameters anyway and how useful they are. Basically like vajra has said, you need to go on ELIMINATION OF SYMPTOMS and you'll be lucky to find a doctor who will listen, or support you because of the whole hysterical TSH suppression, numbers 'out of range' (this range is infallible, totally scientific and not be questioned!!! LOL).

And sorry to put a spanner in the works but endos who are heads of committees and professional groups tend to be the more conservative. If that were possible, as a profession they are not the most open minded bunch at the best of time. And given that their whole area is hormones you'd think they'd be interested in BIOIDENTICAL hormones but whether sex hormones, thyroid hormones, adrenal hormones etc etc natural hormones are considered to be witchcraft and generally suspect.

Also, aside from quantity and type of thyroid hormones going in (my experience is both synthetic T4 and T3 left me feeling like the living dead but I'm coming back to life on NDT) you need to ensure all your other ducks are in a row so to speak to give your peripheral metabolism a chance to work.

Here's a link from TPA on why your thyroid hormones might not be working properly tpauk.com/main/?page_id=1599

and here's a link to STTM's 'ducks in a row' page: stopthethyroidmadness.com/d...

Best wishes

Rebecca

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