Suppressed TSH is okay says endo!

[Coachv]

My GP just phoned me with my results. I am on T4 125mg and T3 10mg per day, and TSH is suppressed - cue annual 'you must reduce your dose' instruction. I had a long chat with GP a couple of weeks ago and said that I needed my Free T3 tested, and that as I am taking T3 (T4 is in range) that this might result in suppressed TSH. She agreed to test free T3 and said I knew more about it than her. She said she would consult an endocrinologist who she had a lot of respect for. I have not seen the actual result yet but apparently the Free T3 came back in range and the Endo is happy for me to continue on my current dose!!!

He suggested the bone density tests so I have several Xrays to look forward to.

Thanks for all the advice on this forum, which has helped me take control of this situation and a positive outcome. The advice to doctors is that if the TSH is suppressed and the patient's T4 is anywhere in range then it is other factors causing the symptoms. Clearly this advice is not correct for everyone.

I had reduced my T4 a bit but am going back onto the original dose, what a relief as I am too busy to risk even more tiredness and brain fog.

Val

[PinkNinja]

That's great new! Do you know which endo your GP consulted?

Carolyn x

[Coachv in reply to PinkNinja]

Hi

I think it was Dr Mark Strachan at Edinburgh Centre for Endocrinology. I googled him and see he is a trustee of the British Thyroid Foundation

Val

[PinkNinja in reply to Coachv]

Thank you That is helpful to know in case anyone in your area is looking for an endo that actually knows something about thyroid rather than just diabetes.

Glad you had such a good experience

Carolyn x

[Totoro in reply to PinkNinja]

Just googled him and he is at the Western General Hospital in Edinburgh.

I suspect this is the endocrinologist who the BFT group in Edinburgh say is good at the Western. I saw another one they recommended at the Edinburgh Royal Infirmary.

I wonder why some people get referred to the Western and some to the Royal in Edinburgh?

Great to hear he is ok with your suppressed TSH and offering bone density scans. The scans are something I would be interested in too.

So good to hear you're getting the treatment you need to get better.

Totoro x

[Coachv in reply to Totoro]

My GP said she had trained with him. It's good that they are not all pushing the same line.

Val

[Clarebear]

Great news My endo I happy with my suppressed TSH too - < 0.02 as my ft3 and ft4 are in range (I'm on Armour). Lets hope they spread the word... xx

[zizi in reply to Clarebear]

Hi Clarebear my TSH is also suppressed 0.02 (0.3 - 5.5), FT4 18.8 (12.0 - 22.0) but FT3 still out of range 9.3 (3.9 - 6.8). Still not sure what this means. GP has asked me to make an appointment to see him. Last time my FT3 was 12.0 so has improved. Does it have to be in range?

x

[Clarebear in reply to zizi]

Hi zizi - I think most doctors probably think it should be in range, but Paul Robinson doesn't seem to think so. I think symptoms are ugh more important xx

[zizi in reply to Clarebear]

Thanks Clarebear. That's reassuring. I have decreased my NDT quarter grain, but my GP is obviously not happy. Waiting to hear from Dr S, but I don't think he will be worried as such. Have been summoned to the GP's surgery!

[Clarebear in reply to zizi]

What dose are you on now ?

[ChemicalAngel]

Hi, I have had the Dexa Scan for bone density twice, and it is really easy!

They use a special scanner and they take shots of your lower back and a hip joint. I wore joggers and had to take my bra off as you cant have any metal on you, but you dont need to strip if you dont have metal on.

Good luck

Ann xx

[zizi]

Hi Sorry Clarebear couldn't get the 'reply to this button' to work. I'm currently on 2 and 1/2 grains. I cut right back for a couple of days last week then went back up to 2 and 1/2 and felt really good. Slight neg thoughts but not serious. Tried 2 and 3/4 again but no better. Trouble is I had to leave off early dose for blood test on Tues and that made me feel terrible. I've cut right back today to start on normal dose tomorrow. Hopefully 2 and 1/2 will be ok for me.

ChemicalAngel did you manage to get the Dexa Scan on the NHS. Dr S suggested having this might be a good idea.

[capricorn in reply to zizi]

I had a DEXA scan about 6 weeks ago and that was on the NHS, it was requested by my Consultant. I actually decided not to wear a bra when I went to save getting dressed in one of those back to front gowns and it was altogether quite a pleasant experience - good comfy bed/couch, pillows for my head. They strapped my ankles to a foam block to ensure my hip was aligned and didn't move. All over and done with in about 5 mins.

[zizi in reply to capricorn]

Thanks Capricorn. Hopefully my GP will listen to Dr S and let me have one.

[Coachv]

I think you should get the Dexa scan on the NHS, my GP has referred me for it.

Thanks for all the replies everyone!

Val

[zizi in reply to Coachv]

Thanks for getting back.