Treatment or monitoring?

[RoseVie]

Hi all, I would appreciate some advice, please

I have recent blood results as follows:

TSH 5.6 (0.27-4.20)

T4 13.1 ( 12-22 )

TPO antibodies 97 ( less than 34 )

My daughter has Hashimotos, has had a thyroidectomy and takes Levothyroxine.

I have general symptoms of fatigue, very dry skin, high cholesterol and more recently feelings of jitteriness.

Looking back at previous blood results, TSH has been above or borderline range (TSH 0.27- 4.20; T4 12.0-22.0) for a few years:

2017 TSH 5.5; T4 15.8

2021. TSH 8; T4 16

2022. TSH 4.20; T4 13.7

2024. TSH 4 ; T4 14.6

I have an appointment to discuss this with GP. In light of the above, what questions should I be asking and does this warrant treatment or monitoring?

[greygoose]

Hi RoseVie, welcome to the forum.

Looks to me like you've been monitoring for long enough. And if you have Hashi's, it's not going to get any better, it's only going to get worse. So, the question is not to treat or to monitor, but how long do you want to wait before you start treating? Because eventually you're going to really need it. There's no point in just monitoring unless you expect things to improve. And with thyroid problems they rarely do.

However, you don't know if you have Hashi's because, by the look of it, you've never had full thyroid testing. Antibodies should be tested to know if you have Hashi's, so one of the questions you need to ask your GP is if he can test those. He'll try to fob you off by saying it's not necessary because the treatment is the same but that's just baloney. You need to know so that you will understand why your levels will jump around, as yours have been doing.

Do you always have the blood draw at the same time of day? That is also important because TSH levels change throughout the day, being highest before 9 am and lowest around midday. So unless the blood draw is always around the same time - before 9 am is best - you cannot compare results.

[knitwitty in reply to greygoose]

Hi grey goose , I think she mentions that her TPO antibodies were 97 ( range below 34 ) at the start of her post , so I think that does confirm has hashi's.

[greygoose in reply to knitwitty]

Ah, OK, thank you. I missed that bit.

[McPammy]

As previous members have said I also think you need some treatment. TSH needs to be between 1-2. Anything above 2.5 and you’ll start to feel unwanted symptoms like you describe you’re feeling. Please also check your vitamin levels of B12, ferritin, folate and vitamin D. Often people living with thyroid issues have low vitamins. If you have then boost them with vitamin supplements. It’s an awful disease to live with. It’s all about balance and trying to get your levels in a place where you feel normal. That may take a little while to achieve by tweaking vitamins and any replacement hormone treatments for the thyroid with medications such as T4 levothyroxine or the magical T3 liothyronine medication. This forum is brilliant and will probably tell you much more than any GP could as they are poorly trained and therefore poorly understand the thyroid world. Stick to your guns and be as much informed as you can when speaking with your GP. Always be firm but polite I say. My GP admitted to me on two occasions that I may as well be talking to a plumber he knew that little about the thyroid. I rest my case.

[jgelliss in reply to McPammy]

Isn't that a shame. I went to a Supposed Great Endo very highly recommended. After speaking to him and realizing how little he new about thyroid. And the Endo himself was on high dosages of NDT. He asked me if I can help him with thyroid issues. He gave me his personal email address. And he went ahead and charged me Hefty office visit. You can't make this story up.I give this Endo one credit. He wanted to learn from his patients and charge them too.

Not a bad deal.

[Tina_Maria in reply to jgelliss]

If I was you I would have charged him as well for your consultation - only fair, or?! 😉

[jgelliss in reply to Tina_Maria]

Your Right. I just didn't have the Guts to do it. You can be assured that I never returned.

[SlowDragon Administrator]

Your high antibodies confirms autoimmune thyroid disease

Test vitamin D, folate, ferritin and B12

You also need coeliac blood test as per NICE guidelines

nice.org.uk/guidance/ng20/c...

[Ruby1]

I suspect you will feel better if you are treated. I was only borderline when I was treated but the GP said I was only going to get worse as, like you I tested positive for autoimmune hypothyroidism. It made a difference.

Edited for typo

[kiefer]

I know this requires immense courage, but if your doctor is dismissive and/or condescending regarding giving you a trial therapy of thyroid hormone (most likely T4) you can cut right to the chase by asking this:

"Is there something you're afraid might happen if you were to give me a trial dose of levothyroxine?" followed potentially with: "Does this have something to do with your liability?" and / or: "I can understand your fear of doing something none of the other doctors would consider doing."

Sometimes, when people (such as doctors) are confronted with their fear of something (making a therapy decision) they will vigorously deny they have a fear and then set about proving they aren't afraid to do the thing you requested by actually doing it.

It's been my understanding and experience that all the thyroid knowledge in the world won't convince a doctor to prescribe or increase the dose of thyroid medication if he's more concerned about what other doctors or his board of medicine will think. This is why so many doctors push statins on hypothyroid patients with elevated cholesterol. They realize that if the patient dies and someone reviews the patient chart, revealing that the patient had ↑ cholesterol and the doctor didn't prescribe a statin, he would be frog-walked out of his office and into the unemployment line, sans medical license. Never mind that statins aren't appropriate therapy for a hypothyroid patient, it's about following the ideology.

[serenfach]

Welcome! Your test prove you have Hashi's. I would simply ask your GP what is to gain by you becoming more ill? What is he waiting for - you to have to go to A+E?

I would also have a look at the NICE guidelines as he has not been following them, and if you can quote any bit of it he knows you are serious. He needs a serious shake!

[RoseVie]

Thank you all for your support and advice. Your responses are very much appreciated. Thank you.