My problem is a suppressed TSH 0.01(again!) Could someone please advise of how to approach the Endo on Weds.

[brooksey]

After 8 yrs of treatment with Dr P, my new GP insisted that I see an Endo and assess latest results. Told I was over medicated--even tho I felt well--and must take thyroxine with a little T3. 3 months later results are TSH 0.01 T4 12.6 T3 5.2. Do not feel well and so many symptoms have returned. How do I fight my corner?

[Hidden]

Please detail the symptoms you are having.

Can you please also supply the ranges for the tests and your exact dosages. Thanks

This will help people to better offer informed support.

L

x

[brooksey in reply to Hidden]

Ranges -T4 10.50-20.00pmol/L T3 3.50-6.50pmol/L daily dose 100mg T4 + 10mg T3 @ 5am + 10mg T3 late evening. Symptoms incl weight gain, excessive tiredness, back and loin pain, IBS, dry and gritty eyes and psoriasis on lower legs etc.

[roslin]

Your TSH will more often than not be suppressed when you take T3 so it is useless taking any notice of it. Many Gps dont know this and it seems, even a lot of endos. Your T4 is at the lower end of range and your T3 is good. I cant see that the endo is going to insist on you reducing your meds. I think there would even be room to increase.

Roslin

[marmaris in reply to roslin]

Hello Roslin that is what I assumed also (although some say the opposite), but my TSH has shot up to 29 it was 0.07 while I was on Levo alone. Had to stop T3 and go back onto Levothyroxine to build up dose from nothing to upto 100mcgs again. Weight gain with T3 and not feeling well.

[roslin in reply to marmaris]

sorry to hear that, I would have thought that is unusual and I cant think of a reason unless you took far too little T3?

Roslin

[marmaris in reply to roslin]

Hi Roslin I had worked upto 50mcgs with cynomel

[roslin in reply to marmaris]

yes that is a bit peculiar

R

[Clutter]

I recommend approaching endos with a sharp stick & regular prods to focus their attention on what you're telling them and distracting them from their beloved TSH numbers.

[Jackie]

Hi No ranges? or what treatment. I suspect GP panicking because of low TSH, this needs a 24 hour urine test for Pituitary gland. I was overdosed by a private doc and very ill, I felt the same as when Hypo,. I do, not think this is your case, but it is something to think about. I know Dr. P never did or recommended the other tests associated with thyroid, 4. I expect an Endo will do this.

The most important thing is to phone the Endo`s sec,before committed, do they like T3?What is their policy on treatment. That way , hopefully will be the right one!If the one you are seeing is not what you want, ask for a new referral after checking up on them.

Always take a list as a prompt for yourself. Do not mention sleep as most ENdos seem blinkered on this and say ,it must be Hyper!!!!

Best wishes,

Jackie

[brooksey in reply to Jackie]

Thank you Jackie. I will get my questions and notes ready for tomorrow's appointment. brooksey

[Jackie in reply to brooksey]

Good luck! Do let us know how you get on.

Jackie

[heathermr]

As your TSH is very low its absolutely no good taking any T4 as it will all be converted to Reverse T3 and oppose the T3 you are taking. I suggest you ask the Endo about Reverse T3 and how it blocks the T3 in the body. You could also ask what effect the low TSH has on T4. I suspect the Endo will just sit there with his mouth open!!!!

You could also ask why nobody thinks that the pituitary can be at fault not producing enough TSH in the first place. Have you ever had a bang on the head as this is enough to damage the pituitary?

Good luck

Heather

[Hidden in reply to heathermr]

Heather

Could you please reference that TSH statement please? Everyone on T3 or natural thyroid has no TSH and some people convert just fine don't they? I'm TSH suppressed for ThyCa. I'd be interested to read the science.

Thanks

Rebecca

[heathermr in reply to Hidden]

This information comes out of Paul Robinson's book Recovering with T3 which is available from Amazon. All of the science behind the TSH statement is in there and has been thoroughly checked by some medics, although it seems news to most Endos! He was instrumental in my recovery having spent years being unwell despite being on a T4/T3 mixture. I do not have a TSH , possibly due to a minor brain injury, and its only since I went onto T3 only that I have got my life and my brain back.

I suspect that some people manage to convert T4 to T3 when they have a low TSH ,but that it goes to a Reverse T3 which effectively blocks out some of the T3. If you take more T3 than T4 can create into Reverse T3 then it would still work but at a reduced level.

Hope this helps,

Heather

[Hidden in reply to heathermr]

Heather

Glad you are feeling better. I think views are changing on this or there are different views. I know STTM are starting to move away from T3 only as first choice for RT3 treatment except in most difficult cases. Dr Lowe also seems to think a suppressed TSH is necessary. See here for the STTM line: stopthethyroidmadness.com/d...

Thanks for replying

Rebecca

[Hidden]

Brooksey

When people introduce T3 it will sometimes show up underlying problems like low iron, low cortisol etc and give horrible jittery symptoms and make people feel quite unwell. Often people then get scared and come off it or think it doesn't work or that they are overmedicated etc. Have you had an iron panel, vits and mins, sex hormones, saliva cortisol test?

See here why thyroid hormone sometimes can't work even if the cells are crying out for it .tpauk.com/main/?page_id=1599

Rebecca

x

[brooksey]

Surprise! A different Endo and a positive outcome. She actually listened and advised reducing the T4, increasing T3, and suggested that ferritin levels etc should be checked. She agreed that some thyroid patients only feel well when their TSH is suppressed, and said to return in 6 months.

[puncturedbicycle in reply to brooksey]

Wow, lucky you! Can we take her prisoner and never let her escape?