I need some advice.: I've had underactive thyroid... - Thyroid UK

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I need some advice.

Soundwell1 profile image
22 Replies

I've had underactive thyroid for over 30 years now. Endo tested me because I had achy wrists after having my baby. I already had type 1 diabetes.

My bloods have been more or less ok over the years but with a little ott behaviour and shakiness, which I put down to my diabetes. I took 75mcg thyroxine. Lately and after trying to take Armour for a while as I started to have lots of aches and pains and lethergy and found out my t3 was 3.2. I also learned I'd got osteoporosis.

Had a test done by medicheck last week for tsh,t4,t3 and tpo antibodies I learn that my thyroglobulin antibodies are 428 klu/L. Thyroid peroxide is 17.4 klu/L. Tsh is 0.142, free t3 4.81, free t4 20.4.

I phoned my gp and she said that we had better get another dexa scan and to lower my t4 meds to 50 mcg per day.

My question is, is this ok??

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Soundwell1
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22 Replies
SlowDragon profile image
SlowDragonAdministrator

Please add ranges on these results

Ft3 looks low

Essential to regularly retest vitamin D, folate, ferritin and B12

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially as you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

We need OPTIMAL vitamin levels

If vitamins are low then TSH tends to drop low

On any NDT like Armour it’s almost always inevitable that TSH will be completely suppressed....you can be UNDER treated despite low TSH

Soundwell1 profile image
Soundwell1 in reply toSlowDragon

Yes that's how I do my tests with medicheck.

Vit d folate and b12 are all ok. But on lower end

SlowDragon profile image
SlowDragonAdministrator in reply toSoundwell1

Please add actual results

Obviously vitamins need improving to optimal levels

SlowDragon profile image
SlowDragonAdministrator in reply toSoundwell1

Low vitamins tend to lower TSH ....which is why dosing according to just a TSH is completely inadequate

Please add actual results and ranges on vitamin tests

Nanaedake profile image
Nanaedake

No, I don't think it is OK to lower levothyroxine to 50mcgs if you are taking 100mcgs. Increase and decrease should be no more than 25mcgs and retest in 6 weeks. It's hard to say if you need to change dose without lab ranges so you need to add those. And state what thyroid hormone you are taking when tested and the dose.

Soundwell1 profile image
Soundwell1 in reply toNanaedake

Sorry, I was on 75mcg thyroxine. Dont know how to correct mistake.

Medicheck ranges.

Nanaedake profile image
Nanaedake in reply toSoundwell1

If you click on 'more' on the lower right hand side of your post then you will get a list, click on edit, edit your post then click on the blue button at the bottom of your post to complete action.

Sorry, just seen Greygoose has already explained about editing.

Soundwell1 profile image
Soundwell1 in reply toNanaedake

If only it had that it would be so easy. Lol

greygoose profile image
greygoose

How long a gap did you leave between your last dose of levo and the blood draw? What time of day did you take the blood?

You have Hashi's, so labs aren't always 100% reliable because levels can jump around. But, it really isn't ok to reduce your levo by 50 mcg in one go. Plus, I very much doubt you are over-medicated on 100 mcg. It's not a very large dose. But 50 mcg is only a starter dose. So, I think she's wrong.

Soundwell1 profile image
Soundwell1 in reply togreygoose

Sorry I was on 75mcg not 100mcg. I haven't learned how to alter my post.

She, my gp, is also requesting a gene test

greygoose profile image
greygoose in reply toSoundwell1

OK, that's not so bad. But I very much doubt you needed to reduce it.

To alter your post, just click on the downward facing arrow underneath. Then, click on edit. That will take you back to the page where you composed your post, and you can change it as you like. So, perhaps you could put the ranges in for the results? :)

Soundwell1 profile image
Soundwell1

24 hours after thyroxine and 9am. for test

waveylines profile image
waveylines

Can you post your results with ranges. Low vit D can cause aches pains and fatigue as you describe. Low vit D means your ability to absorb calcium is reduced which can affect your bones so its really important you have this further up in the range. Have a look at Grassroots or the vitamin D websites who have excellant infomation on this.

B12 is often low in thyroid conditions. You should aim to get your level up over 500. Being low but in range can cause a wide array of symptoms eg tingling, tremors, fatigue, weakness, blurred vision, numbness, incontinence. Have a look at B12d.org. They have a symptom checker. Unfortunately many GPs dont treat B12 even when low but in range even though the low in range often causes significant symptoms.

I dont know medichecks ranges so be good to put them up. To alter your post if I remember correctly, click on the 'more' button below your post it should give a drop down menu -select 'edit'. You can then alter your post and then click on save to submit alterations.

Difficult to comment without the ranges but I agree with others the need to lower the levothyroxine 75mcg dose is not the answer!!

Soundwell1 profile image
Soundwell1 in reply towaveylines

Thanks for replying.

I agree but when my gastritis won't let me absorb good amounts what can I do. Gp was going to do injections of vit b12 but changed her mind. I think she just believes labs findings of, " normal".

Soundwell1 profile image
Soundwell1 in reply towaveylines

I do in fact feel in limbo. I never even knew I had hashis before recent tests.

Partner20 profile image
Partner20

I have no advice re dosage reduction as you have other conditions which your GP will be taking into account. I assume your Type 1 diabetes is being medicated, your osteoporosis too. The latter condition will, unfortunately, be responsible for many aches and pains, and the dexa scan will show if any further deterioration has taken place, necessitating an adjustment in medication. Be wary of immediate supplementation with anything as this may skew any future testing that needs to be done, and may adversely affect your current medication regime. All these things need to be discussed with your GP, to sort out any confusion.

Soundwell1 profile image
Soundwell1 in reply toPartner20

Thanks for your reply.

My vit D test done in Feb 2020 was 61.3 and ref range (50.00-250.00nmolL no action normal.

Sodium was 130 stable haha

Range is (133 nmol/L).

Batty1 profile image
Batty1

I had a DEXA Scan in 2010 and it showed mild Osteopenia (no thyroid issues) in 2016 I was diagnosed with thyroid cancer had a thyroidectomy and was told I must have a very low TSH to keep cancer away. In 2018 I had another DEXA Scan and this scan revealed the same mild osteopenia result that I had in 2010. SO my take away is low TSH is NOT the only cause of osteopenia or osteoporosis....

Soundwell1 profile image
Soundwell1 in reply toBatty1

Thank you for your reply.

I'm aware.

My maternal aunt also had osteoporosis but she also had hashi.

I hope to keep my tsh on the lower side if possible.

Batty1 profile image
Batty1 in reply toSoundwell1

Most Endos and Gps will lower meds based on Dexa scan and low TSH ...

Soundwell1 profile image
Soundwell1 in reply toBatty1

Wow I didnt know that. Ta.

Soundwell1 profile image
Soundwell1

I know.

I've got fibro chronic weakness and muscles are just wasting.

He gave me a trial of armour but they made my heart beats jump about and I have heart disease and have had a big op. I don't have another appt. by phone with him until Dec. Do you think I should phone his sec?

Thanks

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