Test results: would welcome words of wisdom - Thyroid UK

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Test results: would welcome words of wisdom

crimple profile image
8 Replies

I joined TUK 18 months ago. Diagnosed hypo nearly 8 years ago,( Strong family history also of Crohn's) and things not too bad until 2.5 years ago when the TEVA Levo seems to have seriously upset my system (incorrect dosages) Since then I have been very up and down and a year ago asked for TPO test which came back as very raised. After a lot of reading and taking note of advice to others on here, I went GF which did help and then also went lactofree. I have now had a battery of tests both private and NHS:

I have good levels of Vit D=80, B12=1489(191-663), Folate=17(4.6-18.7) as a result of supplementing. Ferritin=154.7(13-150), Magnesium=36.3(29-42), Zinc=5.9(4-7.6), all no supplements and Selenium=136

(76-140) had a few brazil nuts each day.

TPO in 2007 was 15(0-60), last Dec was 101(0-60) in March after 1 month on GF TPO=75 (0-60) and in April after a further month GF was 9.6 (0-34) this was a BH test.

In August after GF and lacto free no TPO detected, however TgA was 52.9 (0-115).(first time tested)

TSH has been very up and down: Oct 2013=0.09(.2-4), Dec 2013 =2.94, April2014 =.34, August =.37 (all same ranges) I was on 100mcg levo last Oct, then told to alternate 75/100 but since Dec reading have been on 100mcg. I am feeling quite good but can be up and down.

Free T4 Oct 2013 =14.9(10-20), April 2014 =16.3 and August 15.02 (same ranges)

Free T3 May 2013 =3.5 (3.1-6.8) April 2014 =4 and August = 4 (same ranges)

I am aware that antibodies can cause fluctuations and my symptoms do seem to vary between hypo and hyper: too hot, too cold, no energy, enough energy to walk 5 miles in a day! Down in the dumps and non communicative to being hyper!

Am I correct in thinking that T4 and T3 need to be higher, that I might not be absorbing the levo and not converting it efficiently. I thought that having optimum Vit and mineral levels would help this!

I also had a urine Iodine test this summer 20 (150-199) so that is not looking good and after reading about Iodine I do have concerns about how the very low level is affecting such things as breast health, where I have had problems before with cysts. (Will try Lugol's iodine next, now TPO antibodies are gone)

Sorry for the long post but I would very much welcome feedback/suggestions from you knowledgeable folks out there.

PS a private scan showed my thyroid was severely atrophied and I am considering having the D102 gene test. I have also thought about low dose naltrexone. I know some on here have tried it with some success where antibodies are concerned.

Thanks for your help

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crimple
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8 Replies
gabkad profile image
gabkad

What do you eat? That urinary iodine level is incredible. It's like you consume almost zero iodine containing foods. Even potatoes and beans can provide some dietary iodine. Fish, eggs.........etc. Not really surprising if the thyroid gland atrophies. It's sort of like not eating adequate protein and muscles atrophy. Or consuming zero calcium and getting crumbling bones.

Compensating with supplements won't work to help with T4 to T3 conversion if there are basic nutrient deficiencies. Other hormones may be off and the body just won't ramp up metabolism. It is in 'survival mode', waiting for better days.

crimple profile image
crimple in reply togabkad

Gabkad I eat fish 3 x per week, meat - except chicken, no eggs (intolerant) lots of fruit and veg, rice and GF pasta, homemade GF bread, some lentils and pulses, but my guts can't cope with too much. Lacto free butter, milk, cream and cheese. All my other mineral levels are above the mid range without supplements and I have good iron and ferritin levels.

However, I have a lot of mercury fillings, since teenage and I'm aware of other things such as pyelograms x2 (I believe they use radio active iodine), quite a number of dental X-rays over the years etc etc. I think I eat a healthy diet in spite of GF and lactofree!

gabkad profile image
gabkad in reply tocrimple

Is it possible the urine test is incorrect? Maybe redo it?

helvella profile image
helvellaAdministrator in reply tocrimple

Is that sea-fish or freshwater?

Considering you are (in one way of looking at things) already taking about 65 micrograms of iodine (as a constituent of the levothyroxine) it does seem surprisingly low iodine.

I too went through Teva levothyroxine failing to deliver the expected dose. And yes, that did affect me too.

Rod

crimple profile image
crimple in reply tohelvella

Helvella, I mostly eat sea bass, haddock, prawns, hake and fresh and smoked salmon. Occasionally have scallops, tinned tuna, roll mop herrings and occasional sardines. I have started using celtic sea salt when cooking but have never been a fan of a lot of salt in my food, hubby always adds extra salt to things I have cooked!

helvella profile image
helvellaAdministrator in reply tocrimple

Sea salt has next to no iodine in it anyway! Most of the iodine in sea water is taken up by the things living there - especially some seaweeds.

Mussels are quite good! And (in my opinion) delicious. :-)

Rod

Spareribs profile image
Spareribs in reply tohelvella

a la creme or mariniere?

iccidd.org/

crimple profile image
crimple

Well it was a Genova test, so it should be accurate and urine tests are quite simple and preferred to a blood test as a better measure of Iodine levels. I have read David Brownstein book about Iodine. I suppose I could do another test, not exactly cheap at £65

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