need guidance

[Merema]

Hello all, I'm new here. I was researching and came across this group. I'm asking for advice actually for my daughter. Here is the story. My daughter as a child was slightly overweight at age of puberty. When she was about 20, we went to a dr who ordered a thyroid US. Results multi nodules. No big concern, at 21 we went to a dr who prescribed metformin 500 to help with insulin resistance. So she has had yearly US to monitor thyroid nodules labs were told always wnl. In 2018 they biopsied 2 nodules results adenomatoid. I'm 2023 one module grew to 2.0 that too was biopsied and sent for molecular result was a less than 1 % chance of malignancy. Ok so she's 35 now, has been extremely symptomatic for hypothyroidism but labs say different. These are her most recent labs

Tsh 0.62. 0.40-4.50

Total T 4 7.1 5.1-11.9

Free T4 INDEX 2.0. 1.4-3.8

T3 uptake 28. 22-35

Don't know why Dr did index test and no Ft4 or Ft3. So here we are her recent weight gain is a lot , she also had hair loss ( widening of part) I believe she has thyroid disease and needs meds

Why her TSH is always low normal is the question. Also this past sono shows enlarged thyroid Last year it was not enlarged. Oh and her antibodies are normal. They elevated after she gave birth in 2021 but are normal now.

lastly, I will add I myself have hashimotos and have been on meds for 30 years,

Thank you in advance to those that may have knowledge and guidance for me/ us!

I

[greygoose]

Hi Merema, welcome to the forum.

So, with those labs, you actually have no idea if she has a thyroid problem. Because apart from the TSH, you don't have any useful information. What will tell you what is going on is FT4 and FT3. So, you don't really know if the TSH is high or low. The three readings have to be looked at in conjunction with each other. You can't tell anything much with just a euthyroid TSH. And it is euthyroid (normal), not low normal.

Oh and her antibodies are normal. They elevated after she gave birth in 2021 but are normal now.

Antibodies fluctuate all the time. But if they were over-range after giving birth, then she has Hashi's, and that doesn't go away no matter what the antibodies do.

So, all she can do is keep testing - but the right tests - and see how things evolve. And it would be a good idea to get nutrients tested: vit D, vit B12, folate and ferritin. They could be low, adding to her symptoms. And, possibly, cortisol?

[Merema in reply to greygoose]

thank you for the reply. Yes I know all bout ft3 & Ft4. Have no idea why this current endo did not test those. Her Vit D is 44 and b12 a year ago was very high as she was over supplementing. Don't know what it is now. Is that true if she had antibodies at one time that she indeed does have hashimotos? I did not know that. She was told it's just post partum thing that happens. I'm goin with her to her appt Friday as I'm much more knowledgeable bout proper testing. Can you have a normal tsh and have hashi? I was diagnosed after giving birth my tsh was 67. Again thank you for replying

[greygoose in reply to Merema]

I know all bout ft3 & Ft4. Have no idea why this current endo did not test those.

He probably doesn't know about them! Endos don't tend to be very clued up on thyroid, most of them are diabetes specialists.

I don't think you have antibodies with postpartum thyroiditis. So, far more likely to be Hashi's.

Can you have a normal tsh and have hashi?

Well, for a start it depends on your definition of 'normal'. If you just mean somewhere within the range, yes, you can. But a truly 'normal' (euthyroid) TSH is around 1. Over 3 is technically hypo.

Also depends on the time of day of the blood draw. TSH is highest before 9 am, and lowest around midday.

And with Hashi's levels tend to jump around, anyway. The TSH just follows the thyroid hormone levels. So, if the thyroid is under attack from the immune system, and the dying cells are depositing their stock of homone into the blood, the FT4/3 are going to be high, so the TSH will be low.

And, also, having a TSH that corresponds to thyroid hormone levels depends on having an efficiently working pituitary and hypothalamus. If either of those is not working correctly, then the TSH will not correspond to the thyroid hormone levels. It's really not as simple as doctors think because all these factors have to be taken into consideration. And that's not even possible if the FT4 and FT3 aren't tested.

[Merema in reply to greygoose]

Yea I get it, I suffered 23 years with an endo who refused to let me try t3. Synthroid only. One day I went on the Synthroid website , low n behold there was a picture of my Dr recommending synthroid 😳 I ran away from him. Ok thank you I will tell her to get proper tests done!

[greygoose in reply to Merema]

Disgusting!

[FallingInReverse]

T3 uptake is a surefire give away that you are in the US!

I am in the US, and T3 uptake was part of my first blood panel, and after that I told my dr exactly what to write the Rx for:

A compete picture of your thyroid health comes from these tests:

1) TSH

2) Free T3

3) Free T4

Plus these vitamins

4) ferritin

5) folate

6) B12

7)Vit D3

****Take tests consistently, all at the same time, around 9 am is best if you can. Fasting before. No biotin for 3-5 days before. Wait a full 6-8 weeks after a dose change ****

[Merema in reply to FallingInReverse]

Her tests from June 2033. Ft4 1.0. 0.9-1.8

Ft3 2.5 2.0-4.4 tsh 0.65 0.2-4.0

[FallingInReverse in reply to Merema]

June 2023 is a long time ago, but at 10-20% through range her Free Ts reflect a level too low for just about anyone to feel well.

However, given these low numbers, one would expect the TSH to be higher. But it’s not. Hence what greygoose notes above regards to a possible issue with the hypothalamus or pituitary at the root. I don’t have experience with that other than to know that one would expect a TSH much higher with such low Free Ts. There are people on this forum with direct experience with it though.

First thing I would do is to get a full set of blood tests including all the above in my first reply. For good measure get all antibodies tested:

1) TRab

2) TSI

3) TPOab

4) TGab

Get them all done at once, only water between waking and the test, as close to 9 am as possible, stop biotin 3-5 days before.

If you have insurance and decent relationship with your daughter’s GP, if you can also ask for a full iron panel that would be ideal. Suboptimal thyroid hormones caused my hair loss, but low ferritin/iron is what causes many peoples (my own daughter included).

Here’s what’s in a basic iron panel:

- Iron

-Total iron-binding capacity (TIBC)

-Transferrin saturation

-Ferritin (note - also in thyroid panel)

-High Sensitivity CRP (CRP-hs)

Given your daughter’s blood history, and her symptoms, it’s likely she needs treatment for her thyroid situation. But we don’t really know without new bloods. Also because low thyroid creates difficulties in absorbing other nutrients, most of us are also deficient in ferritin, B12, D and folate - all of which need to be optimal for your thyroid to work well.

Can you ask her doctor for an Rx for these blood tests?

[Merema in reply to FallingInReverse]

I will definitely tell her to ask. She has excellent insurance. She is always so tired, given she has a very stressful job ( Psychologist) but she never feels good. Thank you for this info. Friday is her appointment at new Endo so we will see ! She told me she's looking for a naturopath as well.

[FallingInReverse in reply to Merema]

Glad she has good insurance. I do as well and have confirmed that there is no limit to how frequently I can get these bloods done.

To get ahead of the game, I highly recommend her having the blood tests (the thyroid list, incl antibodies, the 4 key vitamin/minerals and the full iron panel list printed out so she can simply ask for that directly… politely of course, like, “I need these done and please let me know anything else you recommend.” Like - they will prob want to do a full blood count (CBC) and by all means there are some things in there for your iron health that will be helpful. But not much else for thyroid…

Do not expect any doctor, endocrinologist or even a naturopath (although anecdotally I think these are more helpful) but don’t expect them to really understand the thyroid and blood tests needed. Bonus if they do! But be prepared to ask for specifically those blood tests.

I made the mistake of asking for a full thyroid panel and ended up with what you got Total T4 and T3 Uptake… it’s like no one in this country has learned anything since like 1950 : ) those tests are completely useless … but telling the doctor that challenges them and insults them… so… just be prepared to step around an ego and some incompetence and just make sure you walk out with those blood test prescriptions.

[Merema in reply to FallingInReverse]

Yes I'm no stranger to doctors egos. I worked in healthcare for over 40 years. I'm aware of labs and I understand most results as well. I will be with her Friday and make sure she gets the rx for all these labs. When I saw he did not order the Free t4 &t3 I kinda lost faith in this guy already. But we will see, and yes her cbc shows low hgb and low hct but in range🙄 but I would call it anemia. I just hope this guy can help her.

[FallingInReverse in reply to Merema]

Lol! Me too - I lost faith when I got that T3 uptake result and tried to figure out what it meant … and all it took was Google with the first result saying “an outdated test…” This combined with leaving me on 50 Levo for 9 months and being completely in the dark as to why I felt so bad.

Keep us posted!

[Merema in reply to FallingInReverse]

Oh I know how that goes . Like I said took me very long to find an endo that would give me t3. Daughter was going to her as well but she never treated or dug deeper to find out why her frees were low and tsh low with many hypo symptoms. They all stink! I'm really getting anxious about Fridays appointment. I mean I can only speak so much, she's an adult but I am the one with this thyroid knowledge. Hope I get my 2 cents heard!

[FallingInReverse in reply to Merema]

My daughter is 17 - ambiguous thyroid numbers, I’m optimizing vitamins and in wait and see mode. She is glad to have me lead her to blood test and doctor appointments and all that at this age. But I can envision a time in 20 years where she’s still my baby and I am taking her to the doctor : )

Good luck! The prize will be a blood test Rx… do whatever dance you need around egos and diagnosis/billing codes where you get at least that!!!! I was able to get Rxs for bloods and even a thyroid ultrasound from my daughter’s pediatrician. They wouldn’t interpret or treat her on them… for that I will see a dreaded endo as well for her. Fingers crossed.

Let us know how it goes!!!!

[Merema in reply to FallingInReverse]

Oh yes , my daughter knows if I go with her it will benefit her. Took me awhile to speak up on my own thyroid journey. I'm hoping this endo listens to her issues. I will update after her appointment. Thank you