Newly diagnosed! help!!: Hi all! So I've been... - Thyroid UK

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Newly diagnosed! help!!

camilla_01 profile image
6 Replies

Hi all!

So I've been under assessment for hypothyroid/hashimotos. I'm a bit confused and looking for some guidance as to best treatment options! Here are my latest blood work results.

TPO ab = 221,6 ( reference is <6,0)

TgAb = 7,6 (reference is <6,0)

TSH = 2,16 (reference is 0,35 - 4,94)

T3f = 3,46 (reference is 1,71-3,71)

T4f = 1,12 (reference is 0,70 - 1,48)

I've been started on 25 mcg of synthroid. Started on saturday (today is monday) and instantly have had heart palpitations. Is this dosage ok? Or should i talk to my doctor about lowering it? Should i even be getting treated for this or should I wait until my TSH/T3/T4 levels are affected??

i'm 25 years old and have had symptoms of hypothyroidism for about 2 years now (extreme fatigue, weight gain, overall feel terrible) but before this have always been healthy!

I also have PCOS and have high levels of testosterone, androstendiona, and PTH....

thanks for your help!!!!!

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6 Replies
greygoose profile image
greygoose

Actually, the dose is too low, so you don't want it lowered any further. The normal starting dose is 50 mcg. But, doctors have this weird idea that because the TSH isn't very high, the dose shouldn't be, either. But, it's not that simple. You are having hypo symptoms, and your TSH says your thyroid is struggling. So, yes, it's a good idea to start you on levo now. Before hypo really sets in. Which it is going to do because you have Hashi's.

Do you know about Hashi's? Are you on a gluten-free diet? Are you taking selenium? Your doctor probably won't tell you about those things, but they could help. But, most of all, you need your TSH brought down to zero, to slow down the destruction of your thyroid. :)

camilla_01 profile image
camilla_01 in reply togreygoose

Hi there! Thanks so much for your response. My doctor actually said to start on 25mcg to "test" and if i don't feel better/has no effect then she would actually discard me having hashimotos since my TPO isn't extremely high and my TSH/T3/T4 are in normal range... (???) I don't know much about hashimotos to be honest.... this a new world for me and have been struggling over the past 2 years because first, it was the thyroid. then, they thought i was a celiac (but im not). and lastly, the PCOS.... so i'm just all over the place!! I've read that going gluten free helps, but i don't completely understand why. I was GF for a year and a half when they incorrectly diagnosed me as celiac, and have been eating again for about 6 months but it's true that i felt better when i was GF.

So you think i should continue with the 25mcgs for now, even with the heart palpitations? Its only been 3 days so.. maybe too soon to tell?

greygoose profile image
greygoose in reply tocamilla_01

Oh, she's set you up to fail! An old, old trap, that one. Because the odds are that you're not going to feel better on too low a dose, and then she can just wash her hands of you and, probably, just prescribe anti-depressants - which she'd much rather do!

They have this idea - or pretend they do, personally I don't trust them as far as I can throw them! - that giving you levo is going to 'top up' your thyroid hormones. In reality, it rarely does. What it does do is stop what little production your thyroid was managing, without giving you enough to replace it. So, imagine your thyroid was making 30 mcg T4. You start taking 25 mcg. In their heads, that makes 55 mcg total. In reality, the thyroid stops making that 30 mcg, so what's really happened is that you now have 5 mcg less T4 than you had before you started taking the levo! So, you will feel worse, not better.

Now, whether they really are incapable of understanding that, or they do it deliberately to 'prove' that you don't have a thyroid problem, I don't know. But, the result is the same.

Is your TPO really 221,6 ( reference is <6,0)? And that's what she calls not very high? She's crazy. Your Tg ab are one point over-range, but that's enough to mean you have Hashi's. Antibodies fluctuate all the time, so she has no idea what the maximum level is for you. She really doesn't know very much about this, does she!

And being 'in-range) is no recommendation for your TSH/FT4/FT3. A truly 'normal' TSH, in a euthyroid person, is 0.85 to 1.25. So yours is too high. And, whilst you're not actually hypo until it reaches 3, yourse shows that your thyroid is struggling. Also, given that levels can fluctuate when you have Hashi's, on any given day, your TSH could be higher than that. And it could also be lower. So, not too much credence should be given to the TSH test. It's a deeply flawed test.

You don't have to have Coeliac disease to be sensitive to gluten. The molecular structure of gluten is, apparently, similar to the structure of thyroid tissue, and so can trigger an autoimmune attack. If you feel better when GF, then that's the way to go.

For how long has she told you to take the 25 mcg? If it's less than six weeks, or a lot more than, then she really does know nothing about thyroid. You should go for a retest in six weeks and play her at her own game. Tell her you definitely feel better on levo - even if that's not true - but you feel like you need more, and would like an increase of 25 mcg, please. :)

SlowDragon profile image
SlowDragonAdministrator

High PTH is likely due to low vitamin D

Have you had vitamin D, folate, B12 and ferritin tested

Low vitamin levels are common result of Hashimoto's. Very important to test and supplement to improve if necessary

vitamindcouncil.org/parathy...

Both PCOS and Hashimoto's can be improved by strictly gluten free diet for many many patients

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone 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)

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...

PCOS and Hashimoto's

hashimotoshealing.com/hashi...

pcosdietsupport.com/diet-ti...

camilla_01 profile image
camilla_01 in reply toSlowDragon

Hi SlowDragon, thanks so much for your response!

I have been tested for some of those things! Celiac test came back negative (they actually incorrectly diagnosed me a year and a half ago- but turns out, i'm not celiac.)

At the moment i have a slight vitamin D deficiency

Vitamin D- 25 OH = 23, 80 (reference is 30-100)

Ferritin is OK = 48,20 (reference 10-225)

and haven't checked B12 but i do have my calcium = 98,5 (reference 88-101)

I also have high cholesterol! Which is at 226 and my LDL is at 150 (HDL is at 55)

Greygoose, above, responded that the dosage i received is actually too low but that I should continue treatment even thought my TSH/T3/T4 haven't been severely affected yet. Do you think so also?

Thanks for your help!

SlowDragon profile image
SlowDragonAdministrator in reply tocamilla_01

You may not be coeliac but you almost certainly need to be on strictly gluten free diet with Hashimoto's

High cholesterol is linked to being hypothyroid and will improve as Levothyroxine dose is increased

Vitamin D needs supplementing to bring level up around 50ng/ml (100nmol Uk units)

Vitamin D mouth spray is good with Hashimoto's as it avoids poor gut function

Ferritin looks low. Really needs to be up around 70. Eating liver once a week should help improve

B12 and folate need testing

Completely agree with Greygoose, 25mcg is enough to turn your own thyroid production down or off, but too little to offer any support. Unless elderly or heart condition, the recommended standard starter dose is 50mcg, for just this reason

Bloods should be retested after 6-8 weeks. All thyroid tests should ideally be done as early as possible in morning and fasting. If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Dose should be increased in 25mcg steps (retesting each time) until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Read as much as possible about Hashimoto's, conventional medicine is very unaware of link with gut, gluten and low vitamins

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