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Thyroid UK
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In a Tizzy w/ thyroid

Hello Fellow Thyrodoidians,

My name is Susan, and I’m from Alabama, USA. I used to come here a couple of years ago. Had to start a new account. You have always given me great advice, so here I am again! I have hypothyroidism, but now very hyper from an increase in NDT from 3/4 grain to 1 grain. I got completely off thyroid for 2 days now. Will start back on 3/4 tomorrow morning. I really didn’t think that the 1/4 extra would be too much, but it must be a powerful med! My last readings were:

TSH - 0.946 (Range 0.450 - 4.500 uIU/mL)

T4 - 7.9 (Range 4.5 - 12.0 ug/dL)

I know this is not much for you to go on, but he just tested the 2 this time.???

On 3/4 grain - very hypo Many of the classic symptoms. The really bad one was constipation. I would go 2 weeks (all the while using stool softeners and enemas.). I had to finally take a laxative which worked great, but don’t like to rely on them.

On 1 grain - hyper...hot sweats, racing heart, high BP, couldn’t sleep, crying jags, too much energy (a feeling inside not actually doing things)! BUT I regained my ability to have normal BM’s.

I feel there must be a happy medium somehow.

Dr has never done an antibody test. He actually said, “It doesn’t matter what has caused hypo!” UGH!!!

I am going to make an appointment with an endocrinologist. My dr now is just a GP. May take a while to get an appointment.

To throw another monkey wrench into all of this, I have secondary hyperparathyroidism (due to chronic kidney disease). Is there any correlation between the two?

Please tell me what you think ASAP as I feel desperate!

Oh, I am good with all vitamins/minerals except for a low phosphorus count.

Thank you for reading this long post!


7 Replies

Suggest you watch Brokenbrain.com (free today only) episode 2, 7 & 8 on importance of antibodies, gut health, gluten, dairy and nutrient deficiencies

Get your vitamin D, folate, ferritin and B12 tested

Do you have Hashimoto's also called autoimmune thyroid disease, diagnosed by high thyroid antibodies

If so are you on strictly gluten free diet

1 like

Thanks SlowDragon.

Where do I go to see BROKEN BRAIN? My doc has not checked antibodies. I realize that is very important but he refuses to test me! Says it doesn’t matter! He’s just a GP but I am making an appointment w/ Endocrinologist tomorrow - don’t know how long it will take to get in to see him. Not on gluten free diet at this point.




For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

Thousands on here forced to get private blood tests. NHS won't test FT3 is TSH in range

Essential to test antibodies


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. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies


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

Ask GP for coeliac blood test first

Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance










Thanks a lot, SlowDragon!

I am going to read all the links now.

I will make sure Endo does all the tests you mentioned.



Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne:

Professor Toft recent article saying, T3 may be necessary for many


If you have Hashimoto's then essential to get vitamins optimal first and very likely strictly gluten free diet

Non coeliac gluten sensitivity is extremely common with autoimmune thyroid disease



How are you achieving the doses? Splitting a one-grain tablet? Taking three or four quarter-grain tablets?

Same make?

1 like

After trying Synthroid, doc put me on 1 grain Armour — too much!

Then he dropped down to 1/2 grain. Later on 3/4 grain. Did well on that for a good while. Became very hypo again so he went up to 1 grain again — too much again. Somewhere along the course it was changed to Naturthroid. There is a big shortage of both in the USA. I have always taken whole tablets, but now on 3 - 1/4. I don’t know about the brands.

Thank you for your reply.



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