Sticky Blood-Hughes Syndrome Support
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Could somebody please advise me on my thyroid function results ?

" Serum TSH level " 0.05 \.br \ ft4 added by lab " Serum free T4 level " 16 pmol / L ( 5.6 - 21) " Serum free T3 level " 7.0 pmol /L ( 3.7 - 7 ) " ON T4 MARKER " " Serum TSH level " 0.04 U/mL ( 0.35 - 6.9 ) " Low "...

I'm a little confused as to why my consultant is telling me to lower the dose of levothyroxine..


8 Replies

Hi there, you must for the expertise join Thyroid UK, lots of our members joint them, and also people on there who end up finding out they have Hughes Syndrome, come to ours on their recommendation. Their forum is great as is the actual charity, you can have the same user name, and say I suggested it. They will have help you greatly. Also will look at your results.

They will also wish you to load your results up so they can have a look. Plenty of expertise on that site.



Oh Mary what would we do with out you ? I am not sure but I think I am already a member.

I am sure I joined when I found out I had hypoparathyroidism.....along with everything else !

After a recent fall & dislocating my shoulder that led me to having surgery everything has gone mad......thyroid, sjogrens & fibro myalgia have all flared up.

I hope you & the family are well, I shall check I am still listed with the site. :-)


The only reason why that I can see that he may be telling you to lower your Levothyroxin is because your FT3 is just on the highest end of the normal. However your FT4 is not at the very top of the range although at a respectable point in the range.

We are not Doctors on here and I would love to see what TUK say. I also don't know what symptoms you are getting thyroid wise either but on those results if I was me I would not be changing my dose without having a good conversation with my specialist to understand the reasons why they want it reduced.

If you have had a fall and had surgery the drugs for the surgery can be having a knock on affect with your thyroid. I think things need time to settle down - especially if they put you on antibiotics after the surgery.


It's so nice to hear from you, must add I have trouble using the new site so bare with me.

I think it would be easier to tell you the symptoms i'm not getting, it is hard to say what is doing what.

I have had thyroid problems for many year, at first over active then under (graves) .

Then after many years of battling with Gps & consultants diagnosed with hypoparathyroidism, fibro myalgia, osteo arthritis & now suspected sjogrens, i'm seeing a rhuemy at the end of the month......not that I seem to make any headway after my seeing them.

I wasn't given antibiotics but loads of gas & air together with morphine, one night I was given twelve morphine injections !......the shoulder came out three times so you can imagine the amount given after hours waiting in A & E.

I spent hours waiting to be seen in agony, with muscles, ligaments & tendons tearing i have never been in so much pain, I would have been seen quicker had I have gone to the vets.

One doctor before my surgery was asking me questions about my other conditions.......this is how bad things have got........she thought hypothyroidism & hypoparathyroidism where the same condition, sjogrens she had not heard of !

My mouth was so dry after surgery it was bleeding, where they had used tape on the wounds I blistered.

The lethargy is chronic, skin rubs off in balls, hair is coming out & my eyes are red & sore.

I'm as weak as a kitten so the slightest chore leaves me exhausted.

You can wait weeks to see a Gp who pushes you out of the consulting room before you have hardly had time to explain your plight, consults seem to only look at the part you have been sent to them my bits are all over the damned place.

I desperately need someone to look at the whole picture & make a firm diagnosis, but feel I have more chance of being struck by lightening.

It is really quite frightening to think our lives are in these peoples hands......sorry to rant on but I feel very unwell & just not coping......the shoulder is an added burden & yes it's my right arm so being right handed left me in real difficulty...... jilly*momo


Who is looking after your Hughes Syndrome/APS and associated conditions, if you have told me already, sorry, a brain fog day! However you do need a rheumatologist with expertise and preferably one off the Hughes Syndrome Foundation site of recommended specialists. If not take all your NHS results and go to London Bridge, many of us have had to do this! MaryF


I have not got Hughes Mary but Sjogrens is strongly suspected.........please don't mention brain fog I have suffered with it all week.

I see a Dr Shine in Oxford for the thyroid & parathyroid, Proff Thakkers clinic .

I shall be going to Bath to see Proff McHugh for the second time at the end of the month......but he seems to focus on my Fibro Myalgia & it's not that I's the whole picture that needs addressing.

It's such hard work & I have very little energy to keep battling, I have thought about seeing Proff Hughs.

The key issue is getting there & the consultation fee's, it is not going to stop at one consultation.

I have multiple complications as many of us do on this site......the tests are not only lengthy but there will be many that are very costly.

Mary I have not got that sort of money & I have heard of others going to see him that are sent to other centre's for eyes & hearing problems, i'm in need of all of this.

I have felt for many years that I am dealing with Lupus but I have only had one boarder line result........unless they get a firm blood result they seem to by-pass the many symptoms....I have even resorted to photos where you can clearly see I am very ill without any joy.

It makes you feel so despondent, how I wish they could have a week feeling as I do. Jillymo


Hi, I pay for no test at London Bridge and go along twice a year, taking all my my NHS results with me, same for other family members, the best pro active move we ever made to take charge of our health. Also lists of specialists in your area, if your GP would send you off there: MaryF


Mary I wish, my Gp is like dealing with Hitler in fact I think Hitler had more compassion.

We have a new doctor at my surgery I wonder if he would refer surgery have made so many cut backs I think a referral to London would be out of the question.

I'm going to give it my best shot......if not for myself but to help my poor son who is also suffering.......poor lad takes after me, my daughter escaped the misery.

We live in a modern world so why do we have to battle so's as if alians have moved into the NHS.


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