Under active & struggling: Hi, new to this so any... - Thyroid UK

Thyroid UK

115,667 members134,130 posts

Under active & struggling

MillieT
MillieT

Hi, new to this so any help would be appreciated. I had roi treatment a few years ago and have gradually put on weight! I’ve been dieting religiously for a few weeks and haven’t lost a single lb. This used to be so easy. My recent tft came back with a low tsh 0.237 but my T4 was normal, currently on 75mcg Levothyroxine. Something isn’t working, looking for advice please? Thanks in advance

13 Replies

75 mcg levo is not much of a dose. I think it's more than likely that you are under-medicated. 'Normal' just means 'in-range', it doesn't mean it is actually normal for you. That's why we always say to get a print-out of the results so that you can see. The TSH means very little.

MillieT
MillieT in reply to greygoose

Thanks for replying, I’m going to book an appointment I think and find out all exact figures. I’m not too clued up on all the levels and what they mean but I aim to become a master of them all! I can be like a dog with a bone sometimes and feel now is the time to sort this out, hopefully.

greygoose
greygoose in reply to MillieT

If you live in the UK, it is your legal right to have a print-out of your results - they are YOUR results. And, if you post them on here, with the ranges, we'll help you understand what they mean. You'll soon get the hang of it. :)

That will be a huge help, will get one tomorrow, can call into surgery after work. Feeling brighter already 😀 knowing I can get some advice.

SlowDragon
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common

Just testing TSH and FT4 is inadequate

Ask GP to test vitamins and FT3

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

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 ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

i too didnt lose any weight on levo even at 100mcg - felt bad on it and the weight just piled on even more with levo. i too had RAI treatment. i was apprehensive but sent away for and now take thiroyd. this was two years ago and i feel so much better on it. however, my surgery has stopped testing my T3 and it is hopeless to know how i am doing. i take 2 tablets (I gradually built up to this). If I diet i do lose weight albeit very slowly (about 2 - 3lbs) a month. it is very slow and i have to do some exercise but at least i dont look and feel as if I have been blown up. however, i still have about a stone and a half to lose but at least now I can see some light at the end of the tunnel. i sent away for a medicheck blood test for tsh, t4 and t3 and have just done it but I am not optimistic they will be able to test it as I have sat for half an hour trying to get blood into the vial. i find it very hard to use these blood tests. I followed all the tips to make the blood flow. any tips on how to get it done properly as i dont think i will get a successful result

SlowDragon
SlowDragonAdministrator in reply to thyroidnodules

I pay the extra £25 on Medichecks test and get private blood draw at local private clinic

Since they changed the lance, or possibly since starting vitamin K2 Mk7, I found it impossible to do DIY finger prick

If taking any T3 in any form TSH is likely suppressed. Essential to test FT3 and FT4

Plus testing vitamins important too, they need to be optimal for good conversion

eeng
eeng in reply to thyroidnodules

Try going for a run or a bike ride or running up and down stairs a few times before you try doing the blood test. It makes a huge difference when I go to give blood!

Hello there,

A fully functioning thyroid would give you approximately 100 T4 and 10 T3 - the rest of your daily needs being met by conversion of the stored prohormone T4 into the active hormone T3 as and when needed.

It would seem logical that once your thyroid " is gone " you should have the option of both the above hormones, as a base level for replacement.

Taking RAI, if with Graves Disease, you will reach a " false " low, suppressed TSH on a much lower dose of levothyroxine than people not with Graves.

With Graves it's imperative that T3 and T4 are measured - we have TSI antibodies controlling our TSH, constantly stimulating it, that's why we went hyper in the first place.

Once ablated the feedback loop is broken as we don't have a thyroid to stimulate anymore and we become hypothyroid.

Your TSH reading is of no value -

Prof Toft's counterblast article, on here somewhere, may help you with your doctor.

He was responsible for the guidelines doctors work to but he has now come out, in his retirement to say that he is no longer putting patients forward for RAI owing to the lack of understanding on how to treat said patients once back in Primary Care.

I would suggest you read all you can, equip yourself - doctors are mainstream following the rules and guidelines as detailed on the computer.

I have found no help, support or understanding of my health issues within the NHS :

I know doctors have deaf ears, I now wonder if I had had RAI tattooed on my forehead I might have received some acknowledgement of my unwellness.

I am currently self medicating, am doing ok, certainly better than on monotherapy.

It's a slow process but I am encouraged by my progress,

.

Just to add, follow the advice given, you may find your doctor hasn't and or will not, ordered the appropriate blood tests.

I felt as though I hit a brick wall when I questioned and asked for my actual readings, ending up having to pay privately for T3 and T4.

Normal only means in the range.

It's where you are in the range and the relationship between the two hormones that is crucial.

My conversion also improved when my vitamins and minerals were optimal.

Hope this helps

Hi I got my T4 result which was 15.3 and said to mention to dr I’m having under active symptoms so thought I’d check in before booking an appointment aa generally working all the time so whilst I do go, find it hard work

Stourie
Stourie in reply to MillieT

Hi Millie, because you didn't "reply" in your t4 result folks might not go back to this post. 15.4 really doesn't tell us anything because ranges differ so much. Dd you get a print out and if not ask for 1 and make a new post. Hope this helps. Jo xx

MillieT
MillieT in reply to Stourie

Thanks, will get a print out and make out a new post with all the facts I have. Thanks Stourie

You may also like...