Need Advice Please

[MoonMomma5]

(Blood results in comments)

Hi! I've been lurking and learning until now. I desperately need advice please.

I was dxed in Jan with hypothyroidism and put on 75 mcg of levo. We had recently moved a distance and I saw a doctor who was new to me and clearly not knowledgeable about any autoimmune component let alone the general thyroid.

Although I asked, she would not test for antibodies and was uninterested in any autoimmune component. I assume I have Hashimoto's due to longstanding symptoms (9 years) and now bloods? She also did not order an ultrasound only told me to return in 8 weeks. So my intent was to travel back to my old doctor for her to sort out my bloods. Life happened and I did not go back to either.

My script was out a month sooner than I thought so I decided to give another PA in town a try. I love my old doctor/PA and trying to find one without a giant ego but also knowledgeable is tough.

I saw the new doctor last week and it was dreadful. As soon as I displayed any knowledgeable about anything at all she went sideways! I won't elaborate but I'm pretty upset and will be moving elsewhere but in the meantime ...

Here is where it stands with bloods and her comments (in photos) I have an ultrasound tomorrow. I am very upset that she would make me stop all HRT just to get me dialed in around 1.0. In January my TSH was 9.75. I'll also note that his new doctor also did not see a point in testing for antibodies and basically patronized me. You may note in her comment that she didn't even mention the results.

My questions are:

Do I even have Hashimoto's? The test result is confusing to me and I have had every symptom at some point of both hypo and hyper. Severve symptoms. It has been 9 years of progressive hell.

Why would a doctor make a person go all of the way back to ground zero ... just to see? I feel that it is stealing months of my life and honestly is cruel. Why not just back off my dose?

I forgot to stop B Complex except about 24 hours before bloods. I also consume a lot of extra biotin in my diet. Should this really matter to my bloods? I read here yesterday that it wouldn't most likely at therapeutic levels? Do I need to be retested?

Thank you in advance for any and all advice and knowledgeable!

[MoonMomma5]

Antibodies

Test

[MoonMomma5]

TSH

TSH

[MoonMomma5]

Free t3

Free t3

[MoonMomma5]

Free t4

Free t4

[greygoose]

Hi MoonMomma5, welcome to the forum.

A lot of doctors, especieally endos, appear to be sadists. And this business of 'stopping all meds to get a base-line' happens far more often than it should. And for no good reason! The base-line makes no difference to the ultimate treatment. So it's either sadism or total ignorance. They just do not understand - refuse to understand - how this all works and what it does to us.

And her ignorance is under-lined by her 'advice' about cholesterol! Lean meats and non-starchy veggies! Gave me a good laugh. Does she really believe that you eat fat and it is somehow magically turned into cholesterol? They are two entirely different substances and cholesterol is made in the liver. It has nothing to do with diet or exercise.

So, the thorny question of Hashi's or not Hashi's. And that 'range' for the TPO antibodies looks rather strange. Usually, it stops at about 38, so yours would be well over the top and positive for Hashi's. It is usually the Tg antibodies where the range goes up to 115. So, I'm not sure what to make of that.

Of course, both your Frees are high and it's hard to believe that they got that high on just 75 mcg levo. Plus high cholesterol is usually associated with low FT3, suggesting that the high FT3 has happened recently. So Hashi's would look like a possibility. But you haven't had your Tg antibodies tested, so the picture isn't complete. They could be positive for Hashi's even if the TPOab are not.

You do need to be retested - for one thing to get those Tg antibodies tested, but also because you need to keep an eye on that FT3 and see what it does. But not immediately. Leave it a while. It's hard to say if the biotin is likely to have distorted your results because you cannot know how much you are ingesting through food. But it should be ok. It's more the high doses found in supplements for hair and nails that causes problems. Still, best to stop it before the test just to be on the safe side.

[MoonMomma5 in reply to greygoose]

Thank you so much for your expertise and feedback! I am pretty devastated.

I asked for both antibodies to be tested as I know I've spent years swinging back and forth between hypo and hyper. She only tested one :/

You would be appaled at the entire encounter with this doctor. The saga continues ...

I want to do everything possible to get a lower dose vs nothing. I've experience extreme trauma and mental it us devastating not to mention the physical symptoms ... as you know first hand!

I get 30mcg of biotin in my b complex plus probably up to another 150-200 in diet, I love oats.

Thanks again!

[greygoose in reply to MoonMomma5]

You could just reduce your dose yourself for a while. If it is a Hashi's 'hyper' swing, the excess hormone will be used up/excreted and you will eventually be hypo again, and will need your full dose. And never go back to that doctor again!

On the other hand, you could try a little blackmail: I'll stop the 'meds' if you'll test the Tg antibodies. Once they're tested, just refuse to stop your meds. You have to play them at their own game to get what you want.

[MoonMomma5 in reply to greygoose]

Ok!! Can you explain the hyper swing? Is this an the thyroid is still dying?

Safly mu script ran out Sunday so she has me over a barrel. What will the Tg confirm?

My plan was to go to the ultrasound tomorrow which I'll receive results online. After that I would go then to another new doctor at the clinic's hospital. I've made a stink already so I think they'll find it in their interest to make better choices!?

You've be so helpful!!

[greygoose in reply to MoonMomma5]

Well, as you know, Hashi's is an autoimmune disease. Your immune system mistakes the thyroid for the enemy and sets out to slowly destroy it. From time to time it launches an attack on the thyroid during which the dying thyroid cells deposit their stocks of T4 and T3 into the blood, cause levels for FT4 and FT3 to rise sharply, and the TSH therefore drops low. That is why we call it a 'hyper' swing: looks like hyper results but isn't, it's only temporary.

The unfortunately thing is that doctors do not learn about this in med school, so they do not understand why levels suddenly change, and do not realise the importance of antibodies in diagnosis. Doesn't sound as if this doctor of yours has a clue what is going on, which is why she wants to restart from scratch, hoping that that will give her a clue! I doubt it will. She needs to go back to med school!

Your plan sounds like a good one.

[MoonMomma5 in reply to greygoose]

Im so sorry, I though I had responded! Again, can't thank you enough for your help.

Yesterday I had an ultrasound and got the results. The results made me think after some research that I could have ord's? This morning I got a message from my providor and about want to snap!!! Could you please help me with these results?

How can they tell it is hypothyroidism? By the size? Is it small/atrophic? What should this tell my doctor? What does it tell us? Im going to demand full antibodies, does that seem realistic?

greygoose you are the best! Thank you!

Ultrasound

[MoonMomma5 in reply to MoonMomma5]

I should mention that the yoyo hyper and hypo is what I have experienced for almost 10 years.

[greygoose in reply to MoonMomma5]

I'm afraid I'm not well up on the terminology used by ultrasound technicians, but it would seem that one half of your thyroid is smaller than the other, so yes, it could be Ord's. I have Ord's. My thyroid is the size of a frozen pea. And when it gets too small it can no-longer make thyroid hormone. So that's how they know you're hypo.

From my experience of years of reading other people's blood test results, I have come to the conclusion that those with Ord's are more likely to have high Tg antibodies than TPO antibodies. That was certainly true in my case. There's nothing official or scientific in that, just my observations. So, yes, it is important to get Tg antibodies tested because they could very well be high - mine were in the 1000s - whilst TPOab are low.

Ord's behaves pretty much like Hashi's, the difference being that Ord's people never have a goitre and end up with a shriveled, non-functioning gland.

In any case, you now have official proof that you are hypo, so there's really no point in stopping your hormone to get a base-line. The base-line won't even be the same as when you were diagnosed, and will give her no useful information to 'guide' her. Doctors like her do things like this in an effort to justify their existence because they are totally out of their depth and want to be seen to be doing something, even if it's detrimental to the patient. They should not be allowed to treat thyroid patients.

[MoonMomma5 in reply to greygoose]

I'm glad to have the hormones back, that was distressing! But am still in the dark. According to the report my thyroid is unremarkable. I found online that the right can be a bit bigger so now it seems maybe it isn't my thyroid? I'm just thinking this through. What else can cause TPO of 52 and TSH of 9.75 prior to any treatment. Upon treatment I felt major relief from some symptoms and even felt hyper at the start. I have been sick for ten years. Went through longterm trauma with my late husband. Tried to murder me with an ambush claw hammer attack among years of other frightening things. Anyhow, now my body is broke and doctors don't care! 😭

[greygoose in reply to MoonMomma5]

As far as I know, nothing else can cause high TPOab and TSH. But it is fairly well-known that mental and physical abuse can cause hypothyroidism.

It did say that your thyroid was 'unremarkable', and I'm not quite sure what they meant by that, but they also said that the scan showed you were hypo. So how can you doubt it? I think you might be over thinking this.

[MoonMomma5 in reply to greygoose]

I do plenty of that! The way I understand the report is that it was clinically indicated as hypothyroidism by my doctor as the reason for the scan but I dont think the ultrasound confirmed it. I think it says it is aok based upon the unremarkable part.

I am getting a referral to an endo my dr said she wasn't able to order the other antibodies. I am truly not trying to overthink, only figure out what is actually wrong.

You have been a godsend! Be well greygoose

[greygoose in reply to MoonMomma5]

Ah, yes, I hadn't thought about it like that. As I said, I'm not familier with comments on ultrasounds. I haven't had one for over 20 years.

However...

In January my TSH was 9.75

Was that while you were taking levo? How much were you taking? That's very high and pretty much proof of hypo.

And, even though the TPO antibodies appear to be negative - but I'm still not happy about that range! - the behaviour of your blood test results would suggest an autoimmune disease. You do need the Tg antibodies tested, But I don't think there's any doubt that you're hypo and need thyroid hormone replacement.

You don't happen to have your blood test results from when you were diagnosed, do you?

[FallingInReverse]

helvella can you share your biotin doc link so OP can determine if she needs to retest.

Also

Moonmamma - I hope you are able to refuse and continue with your Levo. Hormones do not like whiplash and we see people take way longer to get better when they zig zag than when low and slow changes are made.

I have no personal experience as I’ve been low/slow/steady - but I read many posts here that people can feel fine and then their doctors tell them to stop all meds … and sometimes it doesn’t take longer than a couple weeks to get into a problem that takes months and months just to get back where you are now.

[helvella in reply to FallingInReverse]

helvella - Biotin supplementation and testing

A short article about how and why biotin can affect blood tests. Includes information about how to avoid any problems.

Last updated 04/08/2024.

helvella.blogspot.com/p/hel...

[MoonMomma5 in reply to helvella]

Thank you!

[MoonMomma5 in reply to FallingInReverse]

Thanks so very much!

I am devastated at the thought of going months trying to get back near optimal. I've been so sick for so long and am doing everything I can to get HRT started as my last pill was on Sunday.

I get 30mcg of biotin in my b complex plus probably up to another 150-200 in diet, I love oats. Not sure if it would interfere.

Thanks again!

[FallingInReverse in reply to MoonMomma5]

Fight like heck.

Don’t give anyone the benefit of the doubt.

Only you will suffer … they won’t. We know it’s hard. We know these people are uninformed and heartless.

But here we are.

Have confidence that this hormone is as essential as insulin for a diabetic. Imagine if they said that to a diabetic. It is beyond absurd. Completely absolutely unbelievable.

So do what you can with purpose. Do your best. And keep us posted. No matter how it goes we’ll be here to give you support and shared experience.

Ultimately you will be fine. Let’s try to get you back to fine as soon as we can!

edit- read Hellvellas doc. You are under but close to a level that may interfere.

You probably need a new test at some point anyway if you’re going on three days and more without t4.

Let’s see how you do with the prescription first anyway.

[RedApple]

Imagine this:

Doctor to Patient:

“Please stand on the weighing scales so that we can see how much you weigh.

Oh dear, I see you are over what we experts have decided is the optimal weight range.

I want you to stop eating anything at all for six weeks so that we can see how your weight is without any nourishment.

What would happen?

The patient would not die immediately. Instead their body would slowly decline, being unable to function optimally. So it is with insufficient thyroid hormone.

MoonMomma5 Please don't allow this to happen to you. Tell the doctor that you would be willing to try a reduced dose, with a retest in four weeks, (which should include thyroid antibodies).

[MoonMomma5 in reply to RedApple]

That would indeed be insanity, great example!! I am fighting the good fight and will keep going! Thank you for you advice, it is good to know I'm not just being crazy!!

[Litatamon]

Hi, you already have some great advice.

I think you - or an administrator - should black out the name in the screenshot.

Welcome & all the best to you getting this all worked out.

[MoonMomma5 in reply to Litatamon]

It does show my first name which is ok by me. The other is the doctor (PA) and I'm absolutely ok having her name shown unless it is not ok with the group. Thanks for commenting!

[tattybogle in reply to MoonMomma5]

hi moonmom , forum rules don't allow you to identify them by name. you'll need to edit it our or remove image .

[MoonMomma5 in reply to tattybogle]

Will do right away!

[MoonMomma5]

Comments

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[MoonMomma5]

UPDATE!

The doctor agreed to lower to 50mcg from 75mcg, the saga continues but that is a huge weight off of my shoulders! I am very thankful for everyone's help!