Need some help and advice: Hi everyone, I was... - Thyroid UK

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Need some help and advice

Nibz profile image
Nibz
9 Replies

Hi everyone,

I was diagnosed hypothyroid last year and have been on 75mcg for the past year. I started to feel more sluggish, experiencing migraines, hair loss and feeling the cold more. On advice when I went for my blood test I didn't take my morning dose as I normally do and my TSH came back as 2.75 and no other results given. My doctor said he was happy to increase my dose to 100 and on the first night I was sweaty, had a headache and bad tummy. Could I actually be hyperthyroid and not hypo as I read online that hyperthyroidism is most likely to cause migraines and hair loss than hypothyroid and now wondering if my dose should not be so high. Not sure if I'm having a panic attack or am feeling hyperthyroid!!! Please advise!

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Nibz
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9 Replies
SlowDragon profile image
SlowDragonAdministrator

No your more likely to have low vitamin levels. Go back to GP and ask that they test vitamin D, folate, ferritin and B12. Make sure you get actual results and ranges

You really need FT4 & FT3 checked too. Ask GP this too.

If you find sticking at 100mcg to hard you can step up slower by taking 100/75 alternate days, but try to stick on 100 for 7-10 days first...it may just be bad first few days.

Do you have high antibodies? Ever been tested

If you do this is autoimmune thyroid disease also called Hashimoto's. In Uk about 90% of hypothyroidism is due to autoimmune thyroid so it's very likely

Hashimoto's affects the gut and low vitamins are very likely

If you can't get full thyroid and vitamin testing from GP

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after.

shaws profile image
shawsAdministrator

Your dose isn't high but we can experience weird sensations when raising the dose and our body has to settle into taking an increase. It takes about 4 to 6 weeks for the dose to gradually be absorbed.

SlowDragon has made good suggestions but include iron into your vits/minerals.

Nibz profile image
Nibz

Hi both,

Thanks,

Yes I have autoimmune with very high antibodies. I had post partum thyroiditis in two pregnancies and then became hypothyroid subsequently after. My vitamin d has always been very severely deficienct and endo put me on 800ui maintenance dose but have been really stupid because I haven't been taking them for over a month! I've never had a panic attack so feel very miserable, think it's a wake up call to take my prescribing seriously even if it's just vitamins. Didn't realise it could affect me so badly! Thanks for the support and advice.

SlowDragon profile image
SlowDragonAdministrator in reply toNibz

If you are severely deficienct then 800iu is never ever going to be high enough dose to raise levels

Look up your local CCG guidelines on vitamin D deficiency

You need loading dose

E.g.

oxfordshireccg.nhs.uk/profe...

Go back to GP or self treat Buying either soft gel vitamin D or mouth spray vitamin D

See SeasideSusie replies on vitamin d

You are looking to raise to at least 70 - 100 is better (UK units)

If you can't get Gp to test vitamin D

betteryou.com/vitamin-d-tes...

Nibz profile image
Nibz in reply toSlowDragon

Hi,

Thanks,

Yes I was given a load of dose to get my levels up. It was an eight week course of liquid vials of something like 50,000 units (can't remember the exact number as it was about a year ago). The endo then said 800ui as maintenance. I have a follow up appointment for my new levothyroxine dose in three months and will request my vitamin D levels as it has been a while.

Thanks for your support, especially with panic attack I experienced it's good to know that I have somewhere to turn to!

SlowDragon profile image
SlowDragonAdministrator

Also very high antibodies and low vitamins indicates very likely gluten intolerant

thyroidpharmacist.com/artic...

chriskresser.com/why-changi...

Just don't expect GP or even an endo to havd any idea about gluten connections to Hashimoto's

But very very many of us find strictly gluten free diet is the key to starting to improve

Plus good vitamin supplements

Nibz profile image
Nibz in reply toSlowDragon

Thanks, yes they did check for gluten intolerance three times as they did suspect it but the results came back negative all three times. My ferritin and other vitamins have normally come back as normal (blood count was done last week, it was normal, they also did a GAD antibody test last week to check if I might have autoimmune diabetes too. They told me these three dieseases (hypothyroid, Celina and diabetes) normally go hand in hand.

SlowDragon profile image
SlowDragonAdministrator in reply toNibz

88% of Hashimoto's find gluten free diet noticeable improvement. Gluten intolerance has no test. They can only test for coeliac- only 5% are coeliac

As my gastroenterologist said, just because they can't test for it, doesn't mean it's not as serious as coeliac

Nibz profile image
Nibz

An update, I continued the meds and ended up in A&E with hyperthyroid symptoms. I am now off the medication completely and will have bloods in six weeks to see if I am euthyroid. I felt better a few days after coming off the meds (doctors orders) my thyroid has recovered before (postpartum thyroiditis). My heart rate is still slightly up but coming down (take a few weeks) The trembling, upset tummy and sweating have gone.

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