Hi, this is my first post to this group so hello! I wonder if you can sort out my confusion for me.
Latest test results have come back from my Thyroid function test and are (as expected) abnormal.
TCH is 0.07
T4 12.5
TSH is now detectable.
Just short of a year ago, I was first seen by my endocrine for hyperthyroidism. I was a bit surprised as apart from the rapid heart and tremors and the bloods - I was feeling more like my thyroid was under-active (tiredness, slight weight gain, hair loss and thinning etc).
Anyway, I have a family history of Graves and my Endo diagnosed this as the cause. My antibodies came back negative.
Prescribed carbimazole and propanalol. I took the carb at 20mg daily and preferred not to take the beta blocker as I also have low blood pressure.
Anyway, it made me feel awful and stopped taking it (made me want to sleep 18 hours a day!). I got a slap on the wrist from Endo for stopping and agreed to take at a lower dose. I did so for a while but again felt awful and put on over a stone. I tapered it off again and haven’t been so bad but heart rate is on the increase again.
Last months results showed a TCH of 13.5 and T4 at 0.02.
So, my question to you good people is - How bad are these results (sorry don’t have printout or FBC). And should I get myself back on carbimazole despite the fact that it makes me feel really unwell?
Next Endo appt is in September.
Thank you
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4872angie
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I assume this is a typo and should read TSH 0.02 fT4 13.5. This and TSH 0.07 fT4 12.5 suggests you are hypothyroid not hyperthyroid. We really need the full blood test results with the reference intervals so contact the doctors and request copies. I'm surprised an endo can diagnose Graves' with negative antibodies, you need to request copies of this test so that we can confirm what antibodies were tested.
Your symptoms could be hyper or hypo although the bloods suggest hypo. Do you know your heart rate? You can buy a heart rate / blood pressure monitor quite cheaply. I would go by how you feel for now but make sure you gather all your test results, your endo does not impress me so far.
There could be other reasons for your rapid heart rate and these should be checked out, I'd also request that your ferritin level is tested. Maybe ask your GP to check out your heart without assuming it is due to an overactive thyroid.
I will have to order the printed results so that may take a while. When I called for results they only provided TSH and T4.
Heart rate resting 73bpm but if I do so much as get up from my chair it will be iro 100-110. With moderate exercise I’m running at 150bpm. I am quite active and relatively fit. That being said, when I was at my symptomatic worse last year my resting pulse was around 110bpm.
GP rules out other heart problems at the time.
Other than the bloods, I had an external exam and the Endo decided it was Graves (most likely due to age, sex and family history). He said only 85% (I think) have positive antibodies so he wasn’t going to reply on that alone. I don’t have a goitre or bulging eyes but perhaps he felt an abnormality. Who knows. I haven’t had any type of scan to confirm.
I’m wondering if the carbimazole has tipped me the other way and I’m now hypo? Is that even possible?
Anyway, I’m currently fairing better off the carb than on it so I will have to wait for next appt to ask questions. If I can get copies of the tests before then I will post them here.
It's perfectly possible that the carbi has tipped you the other way, although you say you haven't been taking it very much, so who knows. But, it's impossible to say anything much about anything without more comprehensive tests.
You do need to know which antibodies he tested, because it's beginning to sound to me like he doesn't know the difference between Grave's and Hashi's - which, amazingly, seems to be quite common! I'm not sure you can tell someone has Grave's from an external examination. You also need your FT3 tested. We don't even have half the story there, with just TSH and FT4. No wonder they get it wrong so often!
I’ve just been reading a few of the other threads and I can see the pattern! I’ve been uncomfortable with this diagnosis from the beginning and I’m rubbish at thinking of things to query when I’m sat in the consultation. I will indeed do some digging and see what results I can muster. I have been lax in follow up blood tests but will ensure I have all the data I can.
Incidentally, before this diagnosis I had been treated long term for B12 deficiency (malabsorption). At about the same time as the thyroid issues my b12 and folate levels stabilised and my red blood cells became regular (after always being abnormal/immature). Bizarre coincidence?
I'm sure someone more knowledgeable will come along and comment shortly, but I had something very similar happen to me so I thought I'd respond.
I have been suffering from Hypo symptoms for some years now, but when I had a set of bloods taken about 3 months back the results showed that I was very Hyper, I did have a few days of a fast heart rate, feeling shaky and on edge and aching muscles.
As these results contradicted how I'd been feeling for some time I repeated the blood test about a week later, the results had dropped dramatically and I was heading towards hypo again.
I posted on here and received great advice and the suggestion that I had Hashimoto's ( autoimmune thyroid ) disease, this is despite never having a high antibody test. It seems that your immune system can attack the thyroid gland and when it dies off a little the thyroid hormones are released into your blood stream which show up on the blood test as you being hyper. With me it was only very temporary, and my results soon started to fall back into the hypo range.
My most recent blood test showed that I had declined further and my GP started me on levothyroxine, I am due another blood test soon and I am hoping for an increase in my medication.
Had I been treated based on the first blood test results I probably would have been on carbimazole by now.
I'm sure one of the more knowledgeable people on here will be along soon to explain it better than I have.
Thanks knitwitty - it’s all a bit confusing isn’t it. I know next to nothing about thyroid function and hadn’t even considered it when I originally went to my GP. I though the tachycardia was due to a dodge heart! x
Would suspect you have Hashimoto's (and that might account for negative Graves antibodies)
We see lots of Hashimoto's patients misdiagnosed as Graves
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or TPO and TG antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If TPO or TG antibodies are high this is most likely Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). Though you can have mildly raised TPO or TG antibodies with Graves
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's and Graves.
Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
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