HELP with tsh results. Worried

[Starry-eyed]

Hi can someone help I have hypothyroidism. I have been told my Freet4 is 15.1 and tsh level is 127. I don't like taking pills. So do I have too? Or will I be OK? I'm a bit worried.

[Meanbeannyc]

Yes, you have to,

[Starry-eyed in reply to Meanbeannyc]

Tha ks sorry new to the forum and I think I replied to myself

[greygoose]

Do you have a range for that FT4? It looks to be below mid-range but we can't really tell without seeing the range - they vary from lab to lab.

127 is very, very high for a TSH. So, would suggest there is something very wrong with your thyroid - or with the testing! Is this the first thyroid test you've ever had? If not, what were the other results. Such a pity they didn't test your FT3, because there can be other reasons for a high TSH, and your FT4 doesn't look that bad.

So, I think, if I were you, I'd insist on another test. Just to be sure.

Oh, and taking pills is better than the alternative if you are really that hypo!

[Starry-eyed in reply to greygoose]

Thank you for your advice. I don't have any ranges. Do you think I should ask for another blood test now. Dr has given me 25mg of levo for 1 week and 50g for 3 weeks or so and then another blood test. I've been plying myself with iodine because I read somewhere that it might be too low.

[greygoose in reply to Starry-eyed]

I don't think there's much point in asking for another test right now. Stick with the levo until the next test is due, and see what happens then. But, always get ranges with blood test results, because they're impossible to interpret, otherwise. Ask for a print-out, and that way you'll get all the numbers.

Plying yourself with iodine is a very dangerous thing to do. Especially if you haven't even had it tested first. It could make things ten times worse because iodine in excess is anti-thyroid. Iodine is not something to play around with, even if it is low. So, be careful what you read, and what advice you take. Always ask on here, first. But, for now, just stop the iodine, and hope your TSH will come down.

[Lalatoot]

Starry-eyed I am hoping that TSH is 1.27. You have that result because you are taking the pills. It would be worse if you weren't and you would be really ill.

I tried to stop the pills and made myself very ill. Here is what I did:

healthunlocked.com/thyroidu...

[Starry-eyed in reply to Lalatoot]

Thanks for your link and reply. I do feel really ill. That's without pills! It's definitely 127tsh I've lost a lot of hair and I feel terrible all over!

[SlowDragon Administrator]

Are you saying you are on levothyroxine and got this result

If so how much levothyroxine are you currently taking

Or this is first ever test?

Are you sure TSH is 127 or is it 1.27 or 12.7

Please double check results and can you add ranges (Figures in brackets after each result)

Full testing needed is 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 if 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)

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

[Starry-eyed in reply to SlowDragon]

Thank you. I don't know what the ranges are. But its defo 127 and I've started on 25mg of levothyroxine. Is there anything else I should get tested for and should I ask for it to be done now? Ive just started on 25mg of levo and I don't want that to then mislead any of the other tests. What do you think I should do? Thanks I've been taking iodine because I read that tsh can be lowered if you take iodine.

[SlowDragon Administrator in reply to Starry-eyed]

Vast majority of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies and/or ultrasound scan of thyroid

Iodine is NOT recommended for anyone with Hashimoto’s

drknews.com/iodine-and-hash...

thyroidpharmacist.com/artic...

What’s your diet like, are you vegetarian or vegan?

Standard starter dose of levothyroxine is 50mcg unless over 60 years old

Bloods should be retested 6-8 weeks after each dose increase

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

[NWA6]

Starry-eyed welcome to the forum 🤗 Are you an older person or have medical conditions? 25mcg is a starter dose for children and the elderly/medical conditions 50mcg would be better and I’m glad that your GP is moving you up to that dose. Ideally you should be on that dose (50mcg) for 6wks and then have another test. After those results you may need to increase to 75mcg, steady for 6wks, test and increase again if necessary. Maybe you’ll be fine on 50 or 75 or 100mcg. Initially blood tests will help guide you but take note of your symptoms and the recovery of them at each stage.

ThyroidUk is a good site to start to educate yourself. Here’s the symptoms list for you to check off

thyroiduk.org/signs-symptom...

Don’t worry so much about your TSH. Your GP will probably only prescribe based on this number but s(he) is just uneducated about thyroid health. Your high TSH and low FT4 is a good indicator that you have hypothyroidism. Your high TSH is because your body is detecting that you do not have enough thyroxine circulating so it’s sending a signal (TSH - Thyroid Stimulating Hormone) to your Thyriod saying ‘come on make some more T4!! Yours is sending ALOT of signal!

Do you know the reason why your thyroid is not making enough thyroxine? Is it Hashimotos (the body attacks the thyroid)?

[Starry-eyed]

Tha ks again for your reply, I'm not elderly, just turned 40 and I don't have any other medical problems. I asked if the Dr thought I had an auto immune disorder and she said she didn't think so because my body is producing thyroxine I'd like to know what the cause is before I get really into taking the levo because I don't want it to disrupt the picture of what's going on. I've read things about not having the right vitamins etc hence a sluggish thyroid but I don't know enough ab t that. I read that levo was a hormone blocker and could stop my body from. Producing any. Do you happen to know if that's true? Thanks again