New to Hypo..Advice on test results :) - Thyroid UK

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New to Hypo..Advice on test results :)

Msjoey profile image
8 Replies

Hi everyone. Im new here & was recently diagnosed with hypothyroidism in February (altho I suspect I’ve had this for years) My initial bloodwork was in December 2017 at my yearly physical. It didn’t include all the other necessary tests (that I’ve read here are necessary..& tnk you for that!!) just the TSH. I’m hoping for some advice on these recent updated test results I’m posting. My Drs think I’m fine now that my TSH has dropped a bit & dont need to adjust anything ..other than giving me the 50,000 unit capsules (of Vitamin D , 25 Hydroxy) once a week for 8 weeks ...followed by 2000 units (OTC) daily after that. I’ve been on 25 mcg of Levothyroxine for a little over 2 months. I thank you in advance ...and any advice is so appreciated!!

Blood work results from 4/20/18 (re/Hypothyroidism)

TSH 4.23 mlU/L (0.40-4.50 ml/UL)

( Last TSH results were 5.27 from December 2017)

T3 free 2.8 ( 2.3-4.2 pg/mLF )

T4 free 1.2 ng/dl. ( 0.8- 1.8 ng/dl )

T4 Total 6.1 mcg/dL ( 4.5-12.0 )

Thyroglobulin Antibodies 293< or = 1 lU/mL F H ( or 1.0 normal ?)

Thyroid Peroxidase AB 54 < 9 IU/mL F H

(Range less than 9 normal?)

Vitamin B12 482 pg/mL ( 200-1100 pg/mL)

Vitamin D, 25 Hydroxy 23 ng/mL (30-100 ng/mL)

*(THEY PRESCRIBED VITAMIN D3 50,000 unit caps , taking 1 capsule once p/week for 8 weeks ..& then after that 2000 OTC units daily

Folate 17.4 ng/mL (it didn’t give a range here but I think they said it was low?)

Ferritin 158 ng/mL ( 20- 288 ng/mL )

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Msjoey
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shaws profile image
shawsAdministrator

Welcome to our forum and I am sorry you have hypothyroidism.

Your starting dose of 25mcg is too low (unless you are frail with a heart disease). 50mcg is a starting dose with 25mcg increments of 25mcg every six weeks after a blood test until TSH is 1 or lower - not higher.

Levothyroxine is inactive and it has to convert to T3. Your FT3 isn't high enough yet and should be upper towards the upper part of the range. So should the FT4. We have millions of T3 receptor cells in our bodies and to enable our metabolism to work as normal we need a sufficient dose of thyroid hormones and sometimes we need the addition of some T3 to T4.

B12 is on the low side and needs to be around 1,000. Both it and Vit D are pro-hormones with essential work to do. You can supplement with methylcobalamin B12 sublingual tablets which dissolve under the tongue.

Blood tests should always be at the earliest, and allow a gap of 24 hours between last dose of levo and the test and take afterwards. Don't eat before the test as it lowers the TSH and it should always be taken, usually first thing, with one full glass of water and wait an hour before eating. Some prefer a bedtime dose, in that case you should have eaten about 3 hours previously, especially if you've eaten protein. If you are having a blood test next a.m. miss bedtime dose and take after test and at bedtime as usual.

.

Other members will respond re your other results.

Msjoey profile image
Msjoey in reply to shaws

Tnx so much for your quick reply! And yes i did fast (altho they told me I didn’t need to for these tests ha) & I did do the tests at the earliest , 7:00am & didn’t take the Levo until after the tests so I had that 24hrs between last dose. All this info is thanks to you guys & this great forum. I already filled the same dose of 25 unfortunately & am just starting to try going gluten free. I feel I should be dairy free as well but taking it one thing at a time & at least eliminating as much dairy as possible. Ive had hypo symptoms for years & have just attributed them to getting older but have somehow been fit and active in spite of the symptoms. In recent years tho, the gradual weight gain , joint pains, insomnia, dry itchy skin, hair loss in many places most notably eyebrows & underarms. tired w dry eyes & mouth.. swollen fingers etc etc. Am not sure if I should just finish the 25 amt (I don’t think they’ll up the dose after I already filled it?) & see how the diet change may help , I don’t know? Am also concerned that since I’ve started Levo, hair loss has been very noticeable & worry that upping my dose will continue to worsen the hair loss , I feel I’ve read that so much on here & it’s very scary as well. Hopefully the hair grows back when the dose is right?? I don’t know what to do & just trying to figure it all out , tnk you!!

shaws profile image
shawsAdministrator in reply to Msjoey

Don't worry as we've all been in the same boat at one time or another. What stunned me that I was given this prescription and months later was still unwell, even more symptoms etc. So it was all thanks to Thyroiduk.org.uk (no forum then) website and slowly, slowly I read and learned from others. It is all trial and error because what suits one person may not suit another. It is more difficult today as at one time the doctors used to be more flexible and may have added some T3 to T4 (levo). Some prescribed NDT. They have now withdrawn both T3 and NDT. NDT being the very original thyroid hormone in use since 1892. False stories have been made up about it by the Authorities and you would imagine they should know better. Now they have withdrawn T3 which many were dependent upon.

However, as you're new the following is a list of clinical symptoms. We don't get all of them, thankfully, but as you improve you can tick off the ones that have been relieved.

thyroiduk.org.uk/tuk/about_...

As @Slowdragon has mentioned, you have an Autoimmune Thyroid Disease.

Msjoey profile image
Msjoey in reply to shaws

Tnk you Shaws...& agree there’s so much to learn & am just starting. i was just reading Slow dragons response & yes Hashimotos ..I forgot to mention that the gut issues have been bad for awhile as well, constant really. Hopefully the diet will help , have just been confused & disappointed in the Drs. ...gluten free doesn’t look easy but am determined :)

Msjoey profile image
Msjoey in reply to shaws

Do you mind me asking shaws , how long it took for you to get your dose right ? And do ppl typically continue with hair loss as they tweak their dosage up & down? tnk you!

shaws profile image
shawsAdministrator in reply to Msjoey

A long, long time. Make sure your GP increases your dose every six weeks by 25mcg until TSH is 1 or lower. Always get a print-out and post for comments.

It is only through having a computer that most of us, I believe, can recover their health. There was no forum when I was diagnosed but Thyroiduk.org.uk set me on the right path.

I have tried quite a number of variations of thyroid hormone replacements.

The fact, for me, also was that I remained undiagnosed for a very long time because no-one seemed to know any clinical symptoms nor the A&E who kept me in overnight and discharged with 'probably viral with high cholesterol) a day before I got my own test. My TSH was 100 - not one ever took a blood test despite clear clinical symptoms as they now know none and expertise has been replaced by a blood test (if one is taken).

I have got to my right dose and my right hormone replacement through TUK and my own efforts and I was very fortunate to have consulted Dr Skinner (RIP) a one-man doctor against the whole method of this modern way of and diagnosing/treating patients in the UK.

My hair loss has been due to Alopecia Areata which is different from diffuse hair loss. Many members have said that their hair has returned as dose was increased and some had to switch to another thyroid hormone.

Re your gut issue, have you been recommended to take betaine/pepsin tablets with meals?

SlowDragon profile image
SlowDragonAdministrator

Your High TPO antibodies confirms you have autoimmune thyroid disease also called Hashimoto's

As Shaws says, the standard starter dose is 50mcgs. The trouble with 25mcg is it's enough to tell your own thyroid to take a boliday, but far too little to offer any support. Suggest you push GP to increase dose to 50mcg and retest in 6-8 weeks

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

Hashimoto's affects the gut and very often 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. Dairy is second most common.

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...

vitamin D, with Hashimoto's many of us find Better You vitamin D mouth spray is good as avoids poor gut function. GP will likely only be interested in increasing to around 75nmol. Many find it better to be around 100nmol.

Retesting twice yearly via vitaminDtest.org.uk £29

Msjoey profile image
Msjoey in reply to SlowDragon

Tnx so much @slowdragon! I’ve just started reading about Hashimotos & appreciate this advice! I’m just starting to try Gluten free (I know it’s got to be completely gluten free or it won’t help) & it doesn’t look easy! Dairy free I’m at least cutting down as well. As far as the Vitamin D, do you think that sounds right taking 50,000 units once p week ...& then 2000 (OTC) units daily after? I know my Vit D is very low , ...but is that a safe dosage for those 8 weeks? tnk you!

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