In a big panic, as suddenly having some very unpleasant symptoms, and afraid I might be going hyper again, I got a test done with Blue Horizon. I need to explain that I WAS in a panic, as I'm not even sure I opted for the right test! (From past experience, ladies on the BH phoneline aren't able to advise). So, in hopes that someone might please be able to help me make sense of what's going on, here are the results I have (BH do say you can request additional tests from the same sample within 7 days):
TSH 2.34 (range 0.27-4.2)
Free Thyroxine 13.0 (range 12.0-22.0)
Free T3 4.6 (range 3.1-6.8)
The one thing I understand from this is that the TSH is higher than I've seen it for years (1.07 last Aug, and hadn't registered at all for years before that). Something must be wrong, as I feel awful. This has come on fairly suddenly after being stable on 150mg of PTU, but have just been through extremely stressful episode with elderly mum being poorly (I'm carer), work not being very understanding.
I also got a Ferritin test out of curiousity as although my iron always comes up normal, Ferritin has always been low in the past (GP says this is fine if iron OK); also a separate Vit D test (awaiting result), as incidental testing last year showed this to have virtually bottomed out - again, no explanation.
Ferritin 27 (range 13-150, ideally >27)
Very, very grateful for any help interpreting this.
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Midwinter
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You cannot be going hyper with results like this and are more likely needing less PTU because you are nearer to hypo than hyper. Are you under the care of an endo? I don't think you should be managing Graves on your own and the NHS should be doing your blood tests. If you are in UK I think you should see your GP/Endo and explain your symptoms. Perhaps your Graves is calming down. Perhaps they could also test your antibodies to see if they have reduced.
Thanks, Hennerton. I thought maybe hyper because of sudden reappearance of symptoms that suggested that for me, including sweats & eyes bad again. I can see it's not that, tho ... although, having found results from same lab last August, they don't look much different, so confused a to how I was more or less OK in between, and how suddenly this has come on.
I've been avoiding the NHS clinic as they're chasing me for a TT. I'd really rather keep things on an even keel while trying to take care of mum, who's 91 & not in good health. I've explained in other posts how the relationship with consultant (and GP) has deteriorated over this issue, apart from my caring commitment, I don't feel confident to undergo TT when they've been utterly dismissive of some very severe & scary symptoms in the past year ... I now have a rep for being difficult & attention seeking, and am now very cautious about what I share with them. Hence privte test. I'm dreading going back, but sure they will say these results are within range, and that the noticeable eye changes are down to the fact that (they think) I will probably still have active TED after the TT. Another reason why not to have it, from my perspective.
They may be right when they say, in their opinion my Graves is intractable, and TT is the only way, but I've felt loads better once Vit D was corrected, until a week or two ago. I don't feel I was given a fair chance at remission the first time when they took me off carbimazole too early, after a mistake in the notes.
Sorry this is such a long post - bit complicated!
The previous results from last Aug were TSH 1.07, total T4 83, Free thyroxine 13.1, Free T3 4.8. I had an NHS test in the same week, which showed TSH still <1, and they insisted these results were "right in the middle of normal". My own suspicion is that so-called "normal" results aren't where I feel well - and the last few months have proved that I CAN be well... will try to find the NHS results from intervening months.
Re; antibodies, although they tested them last time, at my request, the registrar I saw said, it doesn't matter what the level is, positive is positive, and if you've ever had them, they will come back. So why did they bother to test?! It was positive, but far, far lower than the one previous test from years ago.
We are all so different and it is hopeless for them to try to judge how you feel from a set of results. When will they ever understand that? When I was on Carbimazole I felt better when I was near the bottom of the range as I could not bear the pounding heartbeat I had when it was higher. I gave up trying too quickly, with little support from my private endo and had TT within a year. I applaud you for keeping on trying. TT has been hell unlike the "one pill a day" easy option I was fed and gullibly believed.
I wonder how your iron levels are, as being overactive reduces these considerably and it takes a lot of supplementing to get back to a decent level. Mine were scraping around the bottom for years but I was always told "normal". It was only when I went on T3 only that the problem really showed up. Maybe check it out if you can bear another test! Lots of luck x
... just getting over my amazement at those results being so similar (apart from the TSH) to the last lot. So presumably that means, levels more or less steady, but requiring twice as much TSH to keep them there ... and so less PTU needed?
Also bemused as these are symptoms I'd normally associate with being hyper - suddenly very, very heat intolerant, soaking sweats, trembly hands, anxiety, mind racing day & night ... digestive things (if not diarrhea then certainly going several times a day). Hungry all the time, and losing bulk around the middle (yes that is happening now), water retention and dry skin gone ... eyes "out", eye pain, vision problems ... I FEEL hyper! So I'll get another test in a month or so, if I can last that long, and see if anything's changed.
Is there any point asking the lab to test T4? ... Sorry to keep asking questions.
Next endo appointment is in June; I swore I'd never, ever go back but, what with mum being in hospital I haven't been able to get to the GP to explain & ask for another referral. Eye hospital in May - although if this goes on I'll have to go earlier & ask for steroids.
Thanks for all your advice XX
Hi there
With Graves the INFLAMMATION in your thyroid can be driving 70% of your symptoms regardless of your blood results. However why did they diagnose Graves what are your antibody levels? You need positive TRAB antibodies for Graves and the TSH is suppressed as they block the TSH receptors. The TSH only usually rises with over treatment on CBZ or PTU. Many patients TSH doesn't rise even after RAI or TT because of antibodies. Your TSH is not suppressed so either a) they've misdiagnosed you and you have hashis not graves, b) you are vastly over treated with PTU/ CBZ. Many graves patients stay on CBZ for many years, taking say 2.5mg once a week. The trick is regular testing and tweaks. Block and replace is also a possibility. Quite why they are so obsessed with 'remission' and getting people off meds once they are stable confuses me somewhat .....
In your shoes I'd be looking for a second opinion and at least an uptake scan and an ultrasound. Most graves patients don't sustain a remission and most of us do need a definitive treatment but a TT is a big deal (I know, I've had one). However if it came down to it, I'd take TT over RAI any day.
You can do a lot with diet to bring down the inflammation ... paleo diet, gluten free, tumeric etc etc. Elaine Moore's website is a good resource.
Rebecca
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• in reply to
PS the WORST thing for Graves opthamology is to go HYPO. I'm assuming you are under the care of a specialist TED doctor at an eye hospital?
Thanks, Rebecca. I am familiar with paleo diet, vegetarian, vegan, gluten free, lacto-free, various supplements & everything in between, having been conscious of being hypersensitive to various food & chemicals from an early age & diagnosed with Graves & TED in 2007 and on carbimazole or PTU for most of the last 7 years. HOWEVER, although paleo is something I might be doing if I were on my own, my current home & work commitments mean good, "normal" food is all I can manage - I'm only just coping now.
Having said that, I believe that if my autoimmune problems have a cause (other than a clear family disposition) it's likely to be rooted in psychological factors/trauma; again not things I can fix quickly.
I won't go into detail about problems with endo consultant, or the progression of my Graves, as I've done that at length in earlier posts! Currently on 150mg PTU; arthritic/lupus type reactions to both carbimazole & PTU at higher doses; never able to try block & replace as levels have never gone low enough, even on high doses, until perhaps now ... as I've had active eye disease throughout, they think this is likely to continue, whatever - so no RAI. As this has been my main problem, I can't see the point in risking making things worse.
Over the years I've found the NHS won't test regularly enough, once you're stable, to allow "tweaking" of medication; my GP never bothered with testing once I was discharged the first time from the consultant's clinic, supposedly in permanent remission. I wouldn't let that happen again, but they tend not to want to test unless you're showing symptoms. I've had 2 antibody tests in 7 years, both positive TRAB.
Finally - yes, under eye hospital for the TED - although, I don't think TED patients are particularly well looked after despite NHS directive that they are seen at a specialist unit. What use is a 6-monthly or even 6-weekly appointment when damage can happen in the space of a few days? Don't get me started ...!
I have Graves as well, and when I was on medication and now since a year off medication, I have experienced hyper episodes without "proof" of the blood results - they were always fine. I now know these hyper symptoms come and go. Usually they disappear after a week or two. The endocrinologist said it's possible to feel hyper with good blood test results, as the antibodies can still be active. I am sorry you're having stress with personal problems - maybe you can try to find ways to cope with it, like yoga, breathing exercises, art, sports? I noticed I feel much worse when I'm stressed All the best!
I'm certain you're right, misky. Either that or there has to be some as yet unknown factor that the tests don't measure (my own personal theory). For sure, 6-weekly tests have missed my monthly spikes & dips in the past.
I've reduced my PTU to 100mg, without permission from my consultant, as next appt isn't until June ... still very heat intolerant, soaking sweats (sorry, too much info!), but eyes have calmed right down ... thanks everyone for the sensible advice, I wouldn't have known what to do otherwise!
Hi, Midwinter....I feel your pain.... I have Graves Disease and very active severe TED....I was forced into having my thyroid removed a year ago....I have been very very poorly ever since....and hit many of the brick walls dismissive arrogant doctors had put in front of me.....but after 3 years of mistreatment I have at last reasoned with my Endo who BTW I have only seen 3 times...as I usually got fobbed off with his 2 specialist nurses....who I found out after my TT knew absolutely nothing about GD and were only treating my very uncontrollable hyperthyroid ...granted my thyroid was very enlarged and toxic...but that surely was because of my raging very high Antibodies .....but now my Endo is listening and working with me....I take Levo 50mcg and T3 20mcg. Or was until last week...after seeing him in Nov I was a bit better but still quite ill....after my recent blood were taken..(.I sneakily wrote on my bloods envelope...extra tests)....and it worked....yeahhhhhhh....he'd request only TSH, FT4 and Total T3....so I asked for FT3, Total T3, RT3, RT4 AND TPO and TRAB..... He at 1st said oh very good results everything is normal..!!!..I asked for my printout....and holy.******.. I was very hypo for a GD patient....and my antibodies both test were well elevated ....!!! And they hadn't done FT3 the most important one, RT3, and RT4....
Good job I learnt what to look for...so yes he did admit I was 'slightly' hypo...and I managed to talk him into upping my T3.....to 30mcg...I will up it even more at my choosing from now on....sod the expense !L. It's my body and I want to be well and healthy.....
About my Antibodies......he said 'oh, that's ok no problem...the antibodies have no thyroid to attack now so you'll be OK...'.....WHAT... I don't think so ....IDIOT...In other words he has no idea about GD at all....you only have to look at my hideously popped out, red, misaligned eyeballs, and puffy fat filled eyelids THAT the antibodies are still attacking them...and the rest go my poor mistreated body...for a start my memory is appalling...
My attention span is shocking...I can't even read a book because I lose the plot and have to keep going back to find out who's who and what has happened...
.I started going to church but had to stop because I made some wonderful friends but couldn't remember their names or faces from week to week and I kept mxing people up ...forgetting who's partner or hubby belonged to who....it became so embarassing I stopped going.....
Thank God I'm retired and don't have to go out to work....
Oh and BTW I asked my Endo about 'add back' therapy....Carbimozole 2.5 as a maintenance dose to help my antibodies go into remission.....he'd never heard of it....I wish they'd keep up....and perhaps go back to medical school and learn about our diseases...UK guidelines are far to old fashioned....and I know he will not entertain any discussion about any porcine thyroid meds at all....he told me that straight away....IDIOT...
Sorry for such a long post ....hope I haven't bored you....as my family think I bore them...and I have stopped seeing them altogether....which deeply hurt me...I only have my husband and One friend to talk to that understands what WE ALL go through....it's been such a struggle.....but no-one is allowed in my life who doesn't understand my illness...because explaining to them is hopeless....so me and my hubby keep ourselves to ourselves and answer to no doubting Toms.....
I still get phone calls from my son but very rarely...I've only seen him 6 times in the last 2 years....as his fiancé thinks that I caused his depressive illness....sheer tosh....it's his job and her stressing him out...he admitted that to me when he last phoned me....she is insisting on a big expensive wedding that they are struggling to pay for...for Gods sake they are nearly 40....and lived together for several years.....I got married to my hubby in 2012 after living together for 19 years...we went to the register office with 20 guests and bought them all a pub lunch...no trimmings..no cake...no presents...we just wanted to be married...and it was wonderful.......what the hell is up with people...
Paying 20 grand for these expensive super weddings is ridiculous.....and Her blaming me for being poorly is absolutely appalling...my poor son ...god knows what he is getting himself into.......BTW he only dares to phone me when she is out painting the town red with her friends..... So I only hear from him about once a fortnight....I don't phone him anymore...because their answer phone is always on......
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Help with results please
Help with blood test results please
Blood results help
Blood test results - help please!!
GRAVES BLOOD RESULTS
