Newbie and Confused with my results

Hi! Been having hives for weeks now. Consulted derma at first. Ordered blood test. Here's the results:

TSH 7.08 range: 0.35-4.94

FT3 2.66 range: 1.71-3.71

FT4 0.87 range: 0.70-1.48

Referred to endo

Endo required more tests:

TSH - Irma 3.56 range: 0.25 - 4.0 ulU/ml

Thyroid Peroxidase 10415.19 range:70-130UI/mL

Ultrasound of thyroid gland

Parenchyma is heterogenous

Normal size Isthmus not thickened

No calcification

I'm not feeling anything. I'm not depressed. I'm always sleepy though. No hair fall. Constantly gaining weight. Delayed menstruation. Urticaria on face.

Endo's dx is subclinical Hypothyroidism t/c Hashimoto's, t/c PCOS

RX: Levothyroxine 50mcg for 3 months.

Should I ask for second opinion? Is it really necessary for me to take Levo? I'm hearing a lot of horrible things about it plus it didn't correct anything.

I'm taking loratadine betamethasone twice a day to pacify the hives so far its doing its job.

Thanks. I really want to ignore the labs because I'm not feeling anything (well aside from hives) but this is an autoimmune disease.

6 Replies

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  • Your Endo may want to up your levels of Levo as they may not be strong enough dose but they cant do that all in one go they have to do it gradually.

    It is a tough condition to get right, but glad you found this forum early as they will be of great help (they were to me) ;)

    And also be grateful that you have an Endocrinologist on board willing to do the tests that ours are always refusing to do. Ask all questions here and you will get as much help and support that you wish for.

    Check out these websites too:

    stopthethyroidmadness.com/

    thyroiduk.org.uk/tuk/diagno...

    Hope you feel better real soon x

  • Thank you, Bird-girl. I will read the link and will give update. :)

  • blakeblack What horrible things have you heard about Levo? Levo does actually work for the majority of hypo patients, around 80%+ from what I understand, but those people have no need for support from a thyroid forum. The people who don't do well, the minority, are the ones you read about and who need more than just Levo and may need the addition of T3 in some form, or maybe just need their vitamins and minerals optimised to allow thyroid hormone to work properly.

    Can you clarify this result "Thyroid Peroxidase 10415.19 range:70-130UI/mL". Is that 10,415.19 as in ten thousand four hundred and fifteen point one nine?

    You can't ignore the labs. Your TSH has been over range in one test, high but in range in the other test. The reason for the difference could be that they blood wasn't drawn at the same time and under the same conditions or it could be that because you have high antibodies, so have Hashimoto's, then that could account for the difference.

    You say you don't feel anything but you do have symptoms - you are always sleepy, you are gaining weight, menstruation problems - symptoms of hypo.

    If you have an underactive thyroid - and you have Hashimoto's which destroys the thyroid gland - then your body cannot provide enough T4 which converts to T3 which is the active hormone that is needed by every cell in your body so you have to take some form of thyroid hormone replacement, without it you will eventually become very sick.

    Hashimoto's:

    stopthethyroidmadness.com/h...

    stopthethyroidmadness.com/h...

    thyroiduk.org.uk/tuk/about_...

  • Hi Seaside Susie,

    Thank you for taking time to reply. ☺

    What horrible things have you heard about Levo?

    - most of the negative comments I've read elsewhere gave me the impression that by taking levos they're experiencing the same exact symptoms as a result (weight increase, sleepiness, hair loss). I'm really confused. How can it be the cure when taking it mimics the symptoms.

    The people who don't do well, the minority, are the ones you read about and who need more than just Levo and may need the addition of T3 in some form, or maybe just need their vitamins and minerals optimised to allow thyroid hormone to work properly.

    -thank you for pointing that out. :) I'll be looking for a new endocrinologist this week to be sure that I'm getting the right medicine for my case.

    Can you clarify this result "Thyroid Peroxidase 10415.19 range:70-130UI/mL". Is that 10,415.19 as in ten thousand four hundred and fifteen point one nine?

    -yes. That's ten thousand four hundred fifteen and one nine. This really alarmed me. How can it me that high? Is it because of my recent bout with urticaria? My endo dismissed this though. She based her findings on my TSH level (7.08 range: 0.35-4.94 compared it t3 and t4). If she is not worried I shouldn't be, right? or I'm really confused.

    Both samples were taken in the afternoon.

    My endo is asking me to be back on January 2017 with blood tests again.

    And is it true that once you're on levos you have to be in it for the rest of your life? Like a maintenance?

    Help.

  • Wow blakeblack ! That must be the highest antibody level ever seen on the forum! I'm not Hashi's so have no experience, only what I read, but know that the level will fluctuate as and when the antibodies attack and symptoms will too.

    Urticaria can be linked to thyroid disease - see medscape.com/viewarticle/81... , page 2 discusses this.

    With Levo, in fact with any thyroid replacement, the dose has to be optimal to relieve symptoms. Low starting doses can initially make things worse, but as dose is increased these symptoms should disappear. Hair loss isn't only due to inadequate thyroid hormone replacement or Levo, it is also linked with low ferritin.

    In fact less than optimal levels of vitamins and minerals means that thyroid hormone can't work properly, and that is our own or replacement hormone. So we always suggest testing

    B12

    Vit D

    Ferritin

    Folate

    to see if there are any deficiencies and suggest supplementing where necessary.

    Also important are adrenals and sex hormones, these work together with the thyroid, so if there is a problem there then again the thyroid won't work properly.

    As far as blood tests are concerned, the best thing to do is have the blood drawn at the very earliest appointment of the day (no later than 9am), fasting (water only from previous evening) and Levo left off for 24 hours. This gives consistency so results can be compared like for like but it also gives the highest possible TSH which is what we want if looking for a dose increase.

    Don't expect your endo to know any of this, very few do unfortunately. Most are diabetes specialists and have little understanding of the workings of the Thyroid.

    The aim of a hypo patient is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective ranges if that is where you feel well.

    Dr Toft, past president of the British Thyroid Association and leading endocrinologist, wrote in a Pulse Online magazine article:

    "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

    But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

    This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

    If you email louise.roberts@thyroiduk.org.uk she will let you have a copy of the article which you can print out and discuss with your endo or GP if he is likely to be more supportive.

    As for being on Levo (or other thyroid hormone replacement) for life, then yes. Hashimoto's will eventually destroy your thyroid and it won't produce any hormone itself, in the meantime it will struggle to produce enough. Same for people who have non-hashi's hypothyroidism. Without thyroid hormone we will become very sick, could possibly develop myxoedema coma and eventually die so thyroid replacement is necessary. It is not a drug, not even a 'medicine' as such, it is a hormone replacement for something that our bodies can no longer produce for itself but is necessary for us to live.

  • Thank you so much, SeasideSusie! You are so generous. You made very solid points.

    Seemed like I really need to take levo. I just hope that I won't pack up much weight after the 3 month period of 50mg.

    Anyways, my mom is trying to get me into functional medicine as well. I just have to consult one more doctor.

    Thank you much. ☺ 😊

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