Murphy's Law & Test Results

[nellie237]

I waited patiently for 9 months (although in reality 13yrs since Hashi's dx,, but hey, what did I know without the experiences of all the helpful people here) before paying to get FT3 tested. I had a coeliac diagnosis in Nov 20......so I figured no point in testing while essential nutrients were so low, followed by the kidney injury in Feb/Mar which put a spanner in the works as my Ferritin, RBC's/Haemoglobin fell off a cliff.

Anyway, I got the results of my latest Coeliac Test which is now 1 Um/L.......was 43Um/L (Range 0.1 - 3.5) ,and my kidney function is up to 80%..... was 29% Yay! I've been taking B-Complex, Iron tablets, co-factors etc and results this July are at the bottom and although Ferritin is still far from optimal, I just couldn't wait any longer to test FT3.

I received the finger prick test from Monitor My Health on Monday, and being 'me' I'd already got a blood form from the GP so that I could do them at the same time.

I had the blood draw at 9:30am on Tuesday as per all protocol on here. The lovely phlebotomist at the path lab couldn't use the blood draw to fill the MMH test because they both contained liquid and she was concerned about contamination. She kindly offered to do the finger prick for me, and I agreed, not because I'm squeamish but because it would be done at the same time, and I could get in the post on the way home.

My NHS results appeared 1st this pm

TSH.................................................................................0.05 mu/L (Range 0.55 - 4.78)

FT4................................86.36%.................................20.9 pmol/L (Range 9.5 - 22.7)

and for only the 2nd time in 13 years.

FT3.................................70%.....Ratio 3.73.............5.6 pmol/L (Range 3.5 - 6.5)

MMH results

TSH.................................................................................0.05 mu/L (Range 0.27 - 4.2)

FT4.....................................118%...............................23.8 pmol/L (Range 12 - 22)

FT3....................................52%......Ratio 4.58..........5.2 pmol/L (Range 3.1 - 6.8)

I am on 125mcg Levo and weigh 59 to 60kg. I have felt slightly over medicated for a while, mainly because I want to eat all the time. I should have realised that I might get FT3 tested on the NHS this time. Doh!

NHS

Ferritin..........................................................37 ug/L (Range 10 -291)

Folate..............................................................8 ug/L (Range 3.4 - 12.2)

B12............................................................574 ng/L (Range 211 - 911)

Vit D............................................................93 nmol/L (Range 25 - 250)

I expect the GP will want me to reduce by 25mcg, but I'm going to insist on dropping by 12.5mcg.

Any advice will be very much appreciated.

[Jazzw]

Well, if those were my results, I don’t think I’d want to be dropping my dosage at all.

TSH being low isn’t really an issue when your FT4 and FT3 are in range. And it looks like you need your FT4 to be high in range to convert to enough T3–your FT3 results are quite a way from the top of the range.

Your ferritin levels are rather low, which may also be a factor in your body’s ability to convert enough T4 to T3.

Other than feeling hungry, do you have any other over-medicated feelings? Because I don’t think you are overmedicated to be honest.

[nellie237 in reply to Jazzw]

Thanks Jazz,

It really helps to hear another perspective.

The only other symptom I have is feeling slight tremors in my hands, which I also had before my last reduction in dose in Nov 20. The tremors stopped after the last reduction....so did the feeling Hangry. I'd put the Hangry down to the Coeliac, but now I'm not so sure because I've really noticed it again recently.

I don't understand it at all. I was on 200mcg Levo for 6yrs (2012 -2018), and when I look back at my results the averages were TSH 1.66, FT4 18.57. The past 3yrs I've gradually reduced by 75mcg based on results and the averages are TSH 0.46 FT4 20.56. I went through the menopause before dx, so I don't think its a hormonal thing. My weight doesn't fluctuate by more than 7lbs. I can't say that I've ever felt well since dx.

The ferritin is due to the kidney injury. I'm taking Ferrous Gluconate 300mg daily with acerola cherry, stopping a week before testing. I can't face taking X2 a day again. I did that after the coeliac dx for 2 months and got it up from 15 to 69 (possibly higher if testing had been a bit earlier).

I've got a horrible feeling my HbA1c is going to come back with a bad result because it should be available to see by now. Too many GF Hobnobs.

How is your head today?

[Timbutdim in reply to nellie237]

Have you tried chromium for the tremors???

I've had this symptom, for me a strict keto diet helped, Dr Berg can help with meal plans ect, Also I tried chromium and for me it made a huge difference. Once a strict keto lifestyle was I place I did not need to take the chromium.

Being over medicated can also cause tremors some take propranolol.

[nellie237 in reply to Timbutdim]

Thankyou Timbutdim,

No, I haven't tried chromium, I'll do some reading, but at the moment I feel like I'm rattling with supplements.

The keto diet really, really appeals to me, but I'm cutting down on protein because its hard on the kidneys.

I've had to take beta blockers and high blood pressure meds since 2012 - heart attack, not tremors. Its the main reason for trying to look at where my FT3 stands. Low FT3 = high blood pressure.

[tattybogle]

Ah well, did you not know about that clause in the nice guidelines... " If fT3 testing is done, it must only be done when it's of no use to the patient. "

It turns out i've had 5 NHS fT3's in 18yrs (lucky me) , but never when i definitely felt over/ undermedicated ....(when it would have been really useful in hindsight to know what my fT3 was.)

I think it has something to do with the amount of time you wait for the test ... the more months you have waited for the NHS blood test.. the less likely they are to do the bloody test you were you hoping for.

The difference between the fT4/3 tests is a bit concerning , given how close in time they were taken. Rather confirms my gut feeling that ALL thyroid blood tests area bit of a crapshoot, and they can only be relied upon to tell you whether you are high or low in T4/3, but the fine details of exact %'s are going to be a bit fuzzy between different test platforms/labs.

So we need to get our eye in on what our personal symptoms are , and use Blood results as a sanity check rather than an absolute truth.

Symptoms wise .. I'm pretty certain that the 'fine tremor in fingers' is always overmedication.. it was for me and went away when a slight reduction was made. (of course this was one of the times when they didn't test my fT3 ... Doh )

When i had the fine tremor My fT4 was 119% 19.9 [8-18], but on other occasions it's been way higher than that 242% and i've not felt overmedicated and reducing it has resulted in definite undermedication... go figure.

BUT... the time i had the fine tremor my TSH WAS lower than my usual... it was 0.018 as opposed to my more usual 0.05 /0.09 ish .

Whereas the time fT4 was 242% and i didn't feel overmedicated , my TSH was 0.09... so in same ways i do think TSH is 'reliable' ... (but don't tell any doctors i said that)

[nellie237 in reply to tattybogle]

" If fT3 testing is done, it must only be done when it's of no use to the patient. " Yes, Sod's Law.

"thyroid blood tests are a bit of a crapshoot" - I agree, but I think a lot of others are too.

FT4 at 242% - Wow, I can't imagine that, you should have been bouncing off the walls, or at least a bit like you'd had too much red bull. 🤣

so in same ways i do think TSH is 'reliable' . Well, it is the only consistent result that I got, I won't be telling my GP though.

I've decided to go with 100/125 alternate days, and see where that goes. I was going to start this morning, but in my half asleep state realised that I'd taken the 25mcg instead of the 100. I will also do another MMH test at my next NHS test too.

If I think about it, I'm quite pleased that I'm able to put less synthetic stuff in my body.

[Timbutdim]

Wanting to eat all the time could be feeding bad bacteria, could be sugar issue? What things are you wanting to eat all the time.

[nellie237 in reply to Timbutdim]

Oh, I'm sure there must be loads of bad bacteria in my gut. 🥴

I'm not craving anything in particular to eat......more like, Just give me food NOW. I'm just as happy with salad as a biscuit. I do eat too much sugar though.