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Hashi hell - blood tests

Hashi hell - blood tests

Been struggling with Hashimotos since diagnosis in Sept 2017. Was initially over medicated with levothyroxine - ended up with thyrotoxicosis and tachycardia. Now taking 50mcg daily. Feel awful - fatigue / anxiety / hair loss / brain fog / insomnia. Endocrinologist has given up on me I feel. GP is excellent. Is my only option to take levo and feel rubbish forever? Despairing. What would happen if I stopped taking levothyroxine?

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AnFaDi

You are currently undermedicated. The aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well. Unfortunately you have a result for Total T3 which is of no use, FT3 is the important test.

What were the results when you were overmedicated and how much Levo were you taking then?

Have you had thyroid antibodies tested?

Have you had Vit D, B12, Folate and Ferritin tested?

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Hi, TSH was 0.10 when I was over medicated - (100mcg of levo). Heart rate was 130bpm. I’ve tested negative for anti bodies but scan showed nodules and was told Hashimotos. I can’t absorb B12 so get injections. Current ferritin level is 93. I supplement with vit D.

So I need to ask GP to test FT3?

Endocrinologist has given up on me - asked if I needed to add T3 to levo but she doesn’t think I’d be able to tolerate it. At the end of my tether. Can’t work or do anything normal with my family.

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AnFiDa

A TSH of 0.1 doesn't necessarily mean that you are overmedicated. You would need FT4 and FT3 tested at the same time and you are only overmedicated if FT3 is over range. However, most doctors are TSH obsessed and freak out if it goes below the bottom of the range.

You can ask for FT3 to be tested, you may be lucky.

Your Ferritin level is good.

What is your Vit D level and what dose of D3 are you taking? Are you also taking D3's important cofactors magnesium and Vit K2-mk7?

Obviously B12 is being taken care of, do you have a Folate result, B12 and Folate work together so you need that to be at a good level.

As you have Hashi's and you can't absorb B12, you may have gut/absorption problems which need addressing. SlowDragon has information about this so you could click onto her user name then Replies and you should find some posts she has made about this.

Why has your endo given up on you? I imagine she is a diabetes specialist (most of them are) and doesn't know much about treating hypothyroidism.

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Endo says I should be feeling better and can’t understand why I am having these ongoing symptoms :-(

Thank you for your suggestions - I’ll find out if my Vit D / FT3 / folate to be tested. Seeing GP next week.

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Your endo is probably not a thyroid specialist, but really ought to know that you are undermedicated and probaly have autoimmune thyroiditis (Hashis), which is the most common cause of hypo in the UK - meaning that your symptoms will swing between hyper and hypo as your thyroid is destroyed. So do you actually need the endo, as s/he doesn't seem very clued up?

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Are you on strictly gluten free diet?

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Essential for vitamin D, folate, ferritin and B12 to be optimal

As you have B12 injections are you also taking a good daily vitamin B complex with folate in?

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Definitely get vitamin D tested. Can be linked to insomnia

drgominak.com/sleep/vitamin...

Magnesium and vitamin K2 Mk7 important too when supplementing vitamin D

articles.mercola.com/sites/...

Only make one change at a time and wait at least 10-14 days to assess improvements or changes

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Thank you so much for your advice. Really appreciate it.

The first thing I’m going to do is go gluten free. I’ve only held off because endo says there’s no point, no proof and may end up with coeliac.

Have ordered a vitamin B complex.

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Yes I believed that after negative Coeliac test 22 years ago (and tested again and still negative just before endoscopy)

Confirmed by endoscopy 2 years ago as extremely gluten intolerant (DNA test says probably not coeliac) ......now my endo says..... anyone with Hashimoto's needs to at least try gluten free for 3-6 months

Research linking gut to Hashimoto's is really expanding.

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That makes no sense. How can you "end up with" coeliac if you are not eating anything to trigger it? And if you are gluten-free it doesn't matter if you are coeliac. The test isn't 100% accurate either - you need a gut biopsy to be sure, and many peopel are sensitive to gluten if if they don't have coeliac. Why is the endo so keen for you to keep eating gluten?

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Hi just wanted to add that the I get heart palpitations sometimes but that is because of adrenal gland problems - this is all linked to hypothyroidism - as our adrenal glands can be overworked trying to compensate for the low thyroid. Sorry I'm not a doctor and probably haven't explained this properly!

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Had bloods done on Tuesday, endo going to check if menopause is a factor. I asked for FT3 etc to be checked also. Meanwhile, I’m now on 50/75mcg of levo. I feel like it’s killing me or the Hashis is. So tired, losing weight/hair/my mind. Anxious, tearful, heart racing, my muscles and joints ache. I’m letting my family down and just spiralling

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Hi Angie, reading your post about being overmedicated - I think I'm in the same boat and have been for almost a year. Just wondering if you got relief from your symptoms?

I tested EXTREMELY gluten sensitive so went gluten free last year Sept 2017. About 2 months later I started having on and off horrible symptoms like you describe. Now, months later looking at my symptoms new doc is reducing med because they believe due to gluten free I am absorbing much more of the medicine. CRAZY! My former doc just kept giving me more and more T3 and by Aug I was so flu-like sick, heart racing, 100% exercise intolerant - etc - that a new doc suggested cutting back and, although it has been slow going, I am doing much better. Kind of 2 steps forward and 1 step back. I read it can take a long time for your body to recover from thyrotoxicosis. Interestingly, my TSH had gotten very low (.03, etc) for 3 months leading up to Aug but my T4/T3/Frees never really looked too bad. So tricky! Now, I feel almost normal most days (seems like I'll have a good 4 - 5 days and then slip back for a couple days, then better, etc - I think I'm just adjusting. Anyway, hope you are finding relief!!

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Hi, sorry to hear you’ve had such a bad time 🙁 Pleased you seem to be getting back to normal now. I did not do well on levothyroxine and had a private consultant who started me on too high a dose. The thyrotoxicosis was scary! I quit levothyroxine and started NDT instead in July. I have over medicated myself now! My TSH is undetectable and my FT3 is too high. Feel rotten.

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Oh no! It is a struggle but hang in there at least you know what you need to do to fix it! I have gone from 75 levothyroxine + 20 Cytomel l all the way down to just 50 levothyroxine a huge cut. My symptoms are not nearly as severe and come and go. I think my cells were so saturated with too much T4 and T3 it is just going to take months to really get back to normal. Hang in there!

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