Can anybody help with interpreting blood test results, please? These seem to be within the normal range, so presumably I should be feeling OK now ? I'm on 150mg PTU daily.
Thanks,
Carole
TOTAL THYROXINE(T4) 83 nmol/L 59 - 154
THYROID STIMULATING HORMONE 1.07 mIU/L 0.27 - 4.2
FREE THYROXINE 13.1 pmol/l 12.0 - 22.0
FREE T3 4.8 pmol/L 3.1 - 6.8
Sorry you had no replies - I would suggest posting again in the Qs section..
L
x
Thanks, Louise - will do
How are you feeling? Perhaps a bit hypo? Might be time to discuss a reduction in dose with your doctor, there's really no need to be right at the bottom of the T4 and T3 ranges. How long have you been on the meds?
Hampster x
Thanks ! I had this test done with Blue Horizon as the endo. hasn't been copying me in on test results lately, and will only tell me that I am "right in the middle of the normal range". I get crippling fatigue that comes and goes, joint pain, numbness, carpal tunnel (verified by neurologist), ringing in the ears, dry skin and eyes so dry my cornea is stuck to the inside of my lids when I wake, but am also seeing rheumatologist as there is a suspicion of some other auto immune thing at play. What I understand as my hyperthyroid symptoms - the shaky, nervous, jittery bit, the cognitive side - feels great, all quiet there, thoughts for the most part, focussed.
My endo. is very keen for me to have thyroidectomy, I'm on the wait list with a date in November, but I suspect this is mainly to get me off his clinic list, and if there IS something else at play I don't want to rock the boat just now.
I've been on the drugs for a while (years, it's a long story, currently 150mg of PTU), but can only say I feel very "different" since the rheumatologist discovered a month or two ago I was dramatically deficient in Vitamin D (18) and advised cutting out gluten and dairy. I feel like the Graves side of things, at least, might well be on the way to remission. None of these things had been addressed before, so this is something new - maybe I'm in denial, but I would like to give it another chance, and possibly switch over to carbimazole. However, as I say, I'm headed for an op. date in early November ...
Thanks again for your input, it arrived just in time for my appointment yesterday! xx
Have you seen this from Elaine Moore? If you scroll down to Anti-Thyroid Drugs - Dosage, Timeframe & Remission, and Relapse, a very interesting read:
livingwithgravesdisease.com...
I really can't understand why the vit and mineral deficiencies go so long undiagnosed by Endo's, they're so common with this condition. My magic ingredient was vit B12, but my Endo's wife (his secretary) said it's commonly vit D. So they know it's common, but they don't test it. Do they even care? It seems surgery is all they want to do. I had my vit D tested recently, a year into my treatment, only because I asked for it and because I go privately. To be fair, I haven't had RAI or surgery mentioned at all, maybe in passing, so I guess I'm lucky.
I really think you sound hypo, I hope you get to try out a dose reduction. And also see if you can get the Rheumy to check B12 (pernicious anaemia), folate, and iron/ferritin. Some of your symptoms could be attributable to being low in these things. Did the Rheumy actually test you for Coeliac Disease?
H x
That is VERY interesting - thank you.
I asked again whether the dose can be reduced and/or whether they'd consider a switch to carbimazole. Endo said no, no reduction at all until TSH is >1 (I know it is, from BH results, but awaiting results of this week's hospital tests - but I bet they still won't reduce it).
Re: carbimazole, what would be the point? He said, when we are going to do surgery v. soon anyway? There were 4 doctors in the room at this point, and I couldn't muster courage to say, could I please have another month or two to see what happens ? It feels like they are all so against me, I've been made to feel like I'VE messed THEM about when I'm absolutely certain part of the reason I've been on the drugs this long with little or no result until recently is down to a whole catalogue of errors and inconsistencies in my treatment. They even have the GP and rheumy on side, so I feel railroaded.
He also said, due to other problems, they want to keep my immune system "as quiet as possible" - and seem to equate lower end of thyroid range with quieter immune response ??
I don't really know where to turn - admittedly, I have been on the drugs a very long time (years), don't tolerate the drugs particularly well and have needed a lot of PTU to (eventually) gain control. Having said that, for much of that time (again years), the dose hasn't been high enough to achieve anything, so pretty pointless; and, right at the start, I believe my first remission was scuppered due to not having been on carbimazole long enough - the endo misread his own handwriting (read, started treatment 2001 when it was 2007) and discharged me after only about 9 months on carb.
I've been through so much in the last few months to get this "normal" result, if I have a chance of remission now, I want to give it a go. On the other hand, I can see their point that if it did come back, the tools to treat it seem pretty limited in my case.
Together with refusal to acknowledge some pretty severe symptoms this last year, does not give me confidence to go through surgery with this lot ... oh dear, in tears as I write this ...
C
XX
I'm so sorry you are having this experience, it sounds like quite an intimidating situation to be in a room like that with 4 doctors. I don't know any of your other issues or any other background. But I can tell you that from a passive outsider reading your post it sounds to me like you need a little more time. Is there any one of those doctors you can speak to individually? Maybe bring someone with you for support? Ultimately it very much needs to be your decision, not theirs. Ultimately you just want a chance to sort out your vitamin D levels, which THEY failed to diagnose, and see if it helps. I don't think that's too much to ask.
If you look on Elaine Moore's full website here:
elaine-moore.com/Home/tabid...
And search for vitamin D, you will find lots of useful articles about this. Here's a couple:
vitamindcouncil.org/blog/in...
suite101.com/a/infections-a...
Or you can go onto Pubmed and search under "Graves vitamin D". I found this one that would be perfect for you:
ncbi.nlm.nih.gov/pmc/articl...
"In conclusion, serum vitamin D levels were significantly lower in female GD patients without remission than in those with remission."
In the face of mounting evidence that vitamin D is vital, you have absolutely no reason for feeling silly or intimidated for wanting to give it a chance in your case.
H x
It sounds very dodgy if I am blatantly honest.
I agree with you...it's highly unprofessional to intimidate a patient into TT. If you are not symptomatic of hyper/graves, what's the rush for TT?
I do not know the whole story either but I wouldn't trust any endo who can't even check Vit D. Do you trust a man who can't even cover the basic?
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