Hashimoto’s

Hi I’m new to this site. I have a Hashimoto’s Thyroiditis found on ultrasound and confirmed with TPO antibodies of more than 1300. I had a diagnostic left Thyroid lobectomy in Sept for a symptomatic nodule that was benign and started on 50mcg of Levothyroxine My latest blood results show that I am very Hypothyroid TSH is 81 T4 is 7.9 and T3 is 2. My Levothyroxine has been increased to 125mcg Saw my endocrinologist yesterday and bloods to be repeated in four weeks and reviewed by him

Vit D is 97 and I already take prescribed Vit D3

B12 is 478

Folate is 4.3

I also have autoimmune relapsing and remitting CNS disease thought to be Neuromyelitis Optica, chronic migraine and stage 3 CKD

Just thought I would introduce myself

13 Replies
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Welcome to our forum and am sorry you have hypothyroidism. Your TSH is very high so I think you must have been given other 'diagnosis' for the symptoms rather than being tested for hypothyroidism. This is a previous post which may be helpful:

healthunlocked.com/nkfearly...

ncbi.nlm.nih.gov/pmc/articl...

I just wonder if it is because you weren't diagnosed earlier. I think you must have had clinical symptoms of hypo before being diagnosed. (I am not medically qualified and had undiagnosed hypo).

When you get blood tests for thyroid hormones, it always has to be at the very earliest, fasting (you can drink water) and allow 24 hours gap between last dose and test and take afterwards. Levo is usually taken first thing on an empty stomach with one full glass of water and wait an hour before eating.

When you post results we also have to have the ranges. The reason being that labs differ and it makes it easier to respond.

Blood tests for thyroid hormones are:

TSH, T4, T3, Free T4 and Free T3 and antibodies. Rarely are FT4 and FT3 tested but they are more important than the others. If GP or lab wont do these, you can have it done through one of our two private labs.

GP should also test B12, Vit D, iron, ferritin and folate as everything has to be optimal.

Always get a print-out of your results and the ranges are usually stated, for your own records and you can post if you have a query.

The aim is a TSH of 1 or lower with a FT4 and FT3 towards the upper part of the range.

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Hi thank you for your reply. I have had NMO for the past 5&1/2 years. It is possible that my neurological disease has masked the symptoms of Hypothyroidism although I have been tested a few times in the past and all levels have been optimal until I developed a noticeable nodule on the left lobe. Once seen by my GP I was referred to an endocrinologist and seen the very next day. My TSH at that time had risen to 4 and then 4.76. I had an ultrasound on which it was noted there was evidence of Hashimoto's and an FNA was performed on the nodule of which pathology was Thy3a. Rather then wait another six months to repeat the FNA I opted for a diagnostic lobectomy as I was experiencing swallowing issues and pressure symptoms. The pathology following surgery was benign and I started Levothyroxine at 50mcg. Immediately post op no marked difference in my blood results. Six week post op I had bloods done again where it was noted that my

TSH 81 ( 0.4-4)

T4. 7.9 (9-25)

T3. 2 (3.5-7.8)

Ranges used in brackets. We have established that the right lobe is so badly damaged by the Hashimoto's that it is no longer working when I saw my endocrinologist. Bloods to be repeated in four weeks and monitored by my endo. Note that the above did not become so deranged until after surgery. My GP requested D3 Folate and B12. As part of my Neurological monitoring I have FBC and LFT's done monthly.

I was a nurse for 27 years until I had to take ill health retirement due to my neurological condition in 2013

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Thank you for your past history and you've gone through a lot and I wish you a speedy recovery and proper treatment.

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Thank you. I’m very lucky. I have a very good Endocrinologist and GP. Very good neurologists too

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How fortunate.

If you read posts regularly on here you will see a good endocrinologist who understands the complexities of Hashimoto's is about as rare as hen's teeth.

I would ask for ferritin to be checked, it needs to be approx half way in lab range, otherwise Thyroid hormones struggle to work

Now you are on Levothyroxine you may find you need to consider gluten free diet. You do not need to have any gut symptoms at all but still have gluten problem

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Thank you. I'm very fortunate. Ferritin has been checked and is fine. Gut symptoms are there but I've cut back on glutin and are improving

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Gluten free needs to be 100%

Being as careful as if coeliac

Avoiding cross contamination, e.g. Different Toaster for GF bread

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Thank you and yes I know. I don’t want to go totally gluten free until I’ve seen my GP. I may not need to. In order to be tested to see if just gluten intolerant or Coaliac you need to keep eating Gluten every day. HoweverI also know that going gluten free can help with autoimmunity. One step at a time. I want to get my TF optimal first then explore other avenues

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Your bloods were very low, but that's a huge increase in one go. Usually increased in 25mcg steps to get time to get use to each increase.

Daily vitamin C will help support your adrenal system

Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's

Essential to also test ferritin

See SeasideSusie detailed vitamin advice

Eg

healthunlocked.com/thyroidu...

vitamin D is ok. (100-150 recommended) What dose do you take

Do you also take cofactors- magnesium and Vitamin K2

folate and B12 might benefit from improvement

Many of us find taking daily sublingual B12 and good vitamin B complex helps

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...

With Hashimoto's, until it's under control, our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins. Low vitamin levels stop thyroid hormones working.

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

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)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

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

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/the-gluten...

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

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

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See my reply to Shaw above

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I take 800iu of D3

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Surprised your vitamin D level is as good as it is on such low dose

Most with Hashimoto's find they need much higher supplement

Test twice yearly

Vitamindtest.org.uk £28 via NHS private testing

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I was originally prescribed D3 for my autoimmune neurological condition. I’ve been on a maintenance dose for the last 2 years. Get tested by my GP.

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