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Autoimmune disease

Newly diagnosed hashimotos (I think)

8 replies

itwasthegintalking · 02/11/2021 20:39

Wondering if anyone able to advise please as I'm feeling a bit confused.

Reviewed by endocrinologist for query thyroid issues. Bloods back today and I stupidly left appointment without confirming/clarifying a few things.

So, I have thyroid positive antibodies with a TSH of 5 and T4 of 12.5.
I also have high cholesterol levels (that they said were attributed to thyroid function).

I am symptomatic with jittery feelings, lightheaded at times, cold all the time, tingling fingers, constipation etc. These are not constant all the time but very regular symptoms.

I've been started in Levothyroxine 50mg and need repeat bloods in 3months.

Firstly, does thyroid positive antibiotics = hashimotos? They never used that word but is that wants it equates to?

Will I need to stay on thyroxine forever?

I should have asked but I think I was just taken by surprise, assumed I'd be told bloods wee fine and symptoms were all in my head 😬

TIA

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MrsDoraDumble · 03/11/2021 06:57

Hi Op,
Yes thyroid antibodies indicates you have hashimotos. I would say this was caught in the early stages-my tsh was 49 when I was diagnosed! They’ll start you on a low dose of thyroxine and reassess to get your levels ‘right’. The ‘right’ level of tsh varies by country, clinician and patient. I don’t feel well if my tsh is over 2, but some places won’t treat unless the tsh is over 7!
You’ll need thyroxine for life yes, i think of it like a little vitamin I take daily. Have done for the last 15 years and honestly it makes very minimal impact on my life as my levels are stable. Hope they get yours right soon and you start to feel well again.

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itwasthegintalking · 04/11/2021 07:38

Thanks you for your reply MrsDoraDumble.

Is it common to be symptomatic with TSH levels of 5

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itwasthegintalking · 04/11/2021 07:43

Oops, sent to soon 🙄

Wondering if it's unusual to have symptoms as I said with TSH of 5. You must have felt truly awful at 49.

Started levothyroxine yesterday and not sure if it's a coincidence but I've had a horrible headache last night/this morning.

Possibly just worrying myself, hate taking medications and do tend to over think potential side effects.

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Tabbydancer · 15/12/2021 23:28

Hello,
Have hashimotos abs I’m symptomatic after five. Arojnd six my hair started falling out weight gain sluggish and depressed. I need to be between 1-2 to feel normal. Fifteen years of thurosixine and not problematic tj takeS

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Notmrsfitz · 26/12/2021 17:56

I have underactive thyroid,hashimotos and other stuff going on.
Had the thyroid stuff for about 7 years and I think initially I felt a bit jittery (on edge) as it altered by levels but it wore off after a little while.
I take levithyroxine daily and will always have to - recently had my script altered to a higher dose as my blood tests showed it wasn't working properly again.

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AnkylosaurusAches · 27/12/2021 17:08

Hashimotos is autoimmune thyroid disease which is causing deterioration of your thyroid.

There is actually another type (or two? I forget) with slightly different antibodies. Basically they all attack the thyroid and slowly lead to an increased need for thyroxine as the thyroid wastes away.

Hashimotos is the most common form, but they all pretty much lead to thyroid destruction.

I think it can wax and wane a little in the early stages which can cause havoc obviously.

5 is subclinical but with antibodies too there's clearly some issues.

They usually start on 25 actually though I do expect you'd need around 50 at that level, especially as your thyroid may deteriorate further. Sometimes a mid way dose can be useful eg 25 one day and 50 the next, but you'll need to wait and see, according to levels and also symptoms.

www.btf-thyroid.org/hypothyroidism-leaflet


I probably had hashis though I think I had a different sort of antibody so it may have been a different type. I was diagnosed when the Internet was much younger and never really managed to get clarification. It became a moot point though as my thyroid stopped working in my early 20s.

You'll probably end up on somewhere between 100-150 a day.

You're aiming for a tsh under 2, preferably 1 or just under.

Always take your thyroxine after a blood test. The t4 can sometimes falsely elevate a test if taken an hour or two before.

Take blood tests as early as possible and stick to a time you can manage. (Consistency is useful for management.) this is because your tsh actually varies slightly during the day.

Stop any vitamins that have biotin in a few days/ week before any blood test.

This is a really good (new) fact sheet for management (everything I've learnt over the years!)

www.btf-thyroid.org/living-better-with-hypothyroidism

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AnkylosaurusAches · 27/12/2021 17:15

It's useful to know that thyroxine has a long half life (7-10 days) which is why you need to wait a good 6 - 8 weeks between tests at this stage, sometimes longer (3 mo) to asses symptoms.

It takes that long to build to consistent levels. It does mean that missing the odd dose or taking with your tea isn't the end of the world; miss a dose per week though and it's obviously = to being on a lower dose. Hence consistency is key.

Ferritin can be lowered by hypothyroidism and we often feel better when it's over 80.

B12, folate and Vit d levels can be affected by hypothyroidism and also cause similar symptoms so if you're still struggling it's worth making sure those are optimal.

I've also discovered that peri symptoms are as bad if not worse, especially joint pain, and hrt is really helpful.

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Doggydreaming · 27/12/2021 17:30

Huh. This is interesting.I had a thryoid test recently because of symptoms. My antibodies (thyroid peroxidase) was elevated at 37.5, my TSH was 7.8 and my t4 12.1.My GP said I didn't need medicating and didn't mention hashimoto's as a possibility.

I also found out that I have low vit d and high pth as I went for a scan which found a nodule on my parathyroid. I feel like hell so I'm surprised no-one is suggesting medication for me.

Can I ask how you got to see an endocrinologist? Is that via NHS?

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