Utterly utterly confused: I wrote a couple of... - Thyroid UK

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Utterly utterly confused

Janm51 profile image
13 Replies

I wrote a couple of weeks ago (early Oct) for advice re blood test from doc. Confirmed she had put my levo up from 150 to 175 following a TSH result of 7.54 against range of 0.40 - 4.00. Suggested by forum members that this was probably insufficient and that I should get bloods tested via Blue Horizon to get T3 result. Well I did and have had results back from that today and they are suggesting that I am overactive!!(note when I had the result I had no levo that morning and nothing to eat from the night before. Test was done this Monday at 2pm and 1.5 weeks after doctors test). Results are:

Biochemistry - 1.00 <5.0

Ferritin 83.0 20-150

TSH L 0.17 0.27 - 4.20 (Doc result was 7.54 as above)

T4 131.9 64.5 -142.20

Free T4 H23.04 12 - 22 (Docs result was 18.2 10.0 -25.0)

Free T3 4.97 3.1-6.8

Anti Thyroidperoxidase ABS H 153.3 <34

Anti Thryglobulin 23.6 <115

B12 274 (Doc 319)

Foliate 19.52 (if this is is Serum folate docs result was 8.6)

Do you think these are my results? How can I now be overactive? I have been underactive for 20 years.

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Janm51
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humanbean profile image
humanbean

Having the test done at 2pm was too late. There is a circadian rhythm to the production of TSH and you did your test roughly when it is at its lowest. Testing should always be done before 9am, preferably between 7am and 8am.

Look at the graphs on page 2 of this document :

press.endocrine.org/doi/pdf...

Janm51 profile image
Janm51 in reply to humanbean

Thank you. Problem is I attempted the prick test at home and just would not bleed so had to take a road trip to the nearest hospital to my home that BH use for taking blood - about an hours drive away and they gave me that appt time. Could there be such a discrepency though between me showing as underactive to overactive in a couple of hours? Looks like I have just wasted over £100 :(

humanbean profile image
humanbean in reply to Janm51

It's not that bad. :) You can get lots of information from the results you have. For example, as greygoose says, you aren't converting well.

Also, you are positive for TPO Antibodies, so you now know you have autoimmune hypothyroidism, also known as Hashimoto's Thyroiditis.

Being positive for Hashi's means you should consider experimenting with a gluten-free diet to try and reduce your antibodies.

Look up the website and Facebook page for Izabella Wentz - she is a sufferer herself and has managed to put hers into remission. She's also published a book which gets lots of good reviews.

Your ferritin level is good, so no iron supplementation is required. Did you get a CRP result as well?

Your folate is good too.

Your B12 is much too low and could be giving you lots of symptoms. You should join the Pernicious Anaemia Society community on HU, let them know your results and ask for advice on what you should do about it. The link is :

healthunlocked.com/pasoc

You definitely aren't over-active or over-medicated with the results you have, but you might be wrongly medicated. As a first suggestion you should reduce your Levo when you get your T3 delivered, and add T3 to your dose. You might want to ask about that separately in a new post. Personally, I would suggest reducing your Levo by 25mcg and adding 1/2 tablet T3.

greygoose profile image
greygoose

No, you can't be over-active, because you're hypo and on thyroid hormone replacement. You could be over-medicated, but you aren't. Even though your FT4 is over-range. You're just not converting the T4 you're taking, so your FT3 is too low. (If you were over-active, your FT3 would be over-range.)

What you need, is a reduction in your dose, and some T3 added in. But, you might have to buy that yourself because doctors don't seem to be prescribing it anymore.

Janm51 profile image
Janm51 in reply to greygoose

Greygoose - thank you. I have ordered some T3 and it is on its way. Re. humanbeans advice do you think I need to do another test? Also could you explain what the high TPO reading of 153.3 means. Really appreciate your help as I am new to this site and really trying to get a handle on what I need to do to make myself feel better (currently off work as I feel so ill).

greygoose profile image
greygoose in reply to Janm51

No, I don't think so. You know that your TSH result is skewed because it was done too late, but that doesn't affect the other too. And, as you're going to self-treat with T3, it doesn't make much difference. Needing a high TSH is just to pacify ignorant doctors.

The high TPO reading means that you have Hashimoto's Thyroiditis. This is an autoimmune disease where the immune system attacks the thyroid and slowly destroys it. There's nothing actually wrong with the gland itself except that it is being made smaller and smaller so that it can no-longer make enough hormone.

Eventually, the gland will be completely destroyed, but you can slow down the process by a) going completely gluten-free; b) keeping your TSH at zero: c) taking selenium, as it is known to reduce antibodies.

Unfortunately, there is not treatment and no cure for Hashi's - or any other autoimmune disease, come to that. And doctors know nothing about it. So, don't expect any help from them on that score! You just have to do the best you can for yourself, as mentioned above. And keep replacing those thyroid hormones, of course. :)

Janm51 profile image
Janm51

Thank you Grey Goose and humanbean. Your advice is really helpful - just got such a shock when the Blue Horizon doctor had written that my thyroid was overactive. I will definately do as you have both suggested. I am actually seeing my doctor tomorrow to discuss my thyroid but from what you say there is little point in mentioning the T3 or Hashis as she probably won't understand.

Treepie profile image
Treepie in reply to Janm51

I had a similar Blue Horizon Dr report that Clutter ( i think) thought was wrong.I guess their Dr is as under educated on the thyroid as most others .

humanbean profile image
humanbean

For future reference :

bluehorizonmedicals.co.uk/W...

Janm51 profile image
Janm51

:)

leoopard profile image
leoopard

For someone on replacement therapy target TSH is 0.02-2 miu/l.

Janm51 profile image
Janm51

Update following visit to docs. Said I can't have a diagnosis of Hashimoto without a biopsy and that she had never heard of T4 not being absorbed. Said the treatment for hashis anyway is more T4. Interestingly however on a separate note but during same meeting she suggested an hrt patch as thought I may not be absorbing hrt in tablet form - so acknowledged may not be absorbing hrt pill but said that was impossible for t4 pill which I found strange.

humanbean profile image
humanbean in reply to Janm51

My understanding (so may well be wrong) :

Doctors in the UK don't use the name Hashimoto's Thyroiditis. That is something that spread amongst patients online, where the name was generally used by patients from the US and their doctors.

UK doctors, if they care about antibodies at all (which is not very often), generally refer to "autoimmune hypothyroidism".

A biopsy isn't essential for diagnosis at all, although I suppose some people might get diagnosed with a biopsy when they don't have positive antibodies. (I can only imagine such a biopsy being carried out when cancer might be suspected, not just to diagnose autoimmune hypothyroidism.) But most people just get diagnosed with blood tests.

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