New thyroid results

[Kirstyrc]

After being on 50mcg of Levo for 4 weeks, following a TSH result of 31 mu/l, my TSH is now 4.16 mu/l. I tested at 8am this morning, 24 hours after levo and in a fasting state. I was NOT expecting my results to decrease this much and this quickly. Has anyone experienced this or can provide any insight? I am still feeling rough and concerned that my GP may consider this as normal as it falls just within range (normal range is 0/27mu/l - 4.20 mu/l). Thanks!

[SlowDragon Administrator]

No results aren’t normal

On levothyroxine TSH should always be below 2

Most people when adequately treated will have TSH around or below 1

Push to increase dose levothyroxine up to 75mcg

Which brand of levothyroxine are you currently taking

Retest again in another 6-8 weeks

Meanwhile get vitamin D, folate, ferritin and B12 levels tested and thyroid antibodies if not tested yet

[Kirstyrc in reply to SlowDragon]

Thanks Slow Dragon. My concern is getting my GP to recognise that this isn't normal despite it falling in the "normal" range. It took 4 months to convince them to do any blood tests.

Good to know re TSH. Got a feeling he will adopt a wait and see approach but will try and push for the 75mg if possible. I am on mercury pharma.

No vitamin D testing or ferritin, though I am supplementing with Vit D and k2 spray. Last ferritin test was 75 ug/l (normal is 13 - 150). B12 test from today was 462 (normal is 197 - 771). This is down 100 from my last tests on 18th April. Folate is 6.04 ug/l (normal range 3.89 - 99999). Waiting on antibodies results.

[Kirstyrc in reply to SlowDragon]

Hi SlowDragon. Antibodies tests have now come in! They tested thyroid peroxidase Ab and my results were <15.0 IU/ml (normal range 0 - 33). I am somewhat confused by this. I highly expected this to be abnormal. Is it possible for thyroid conditions to just happen? I have never had children.

[SlowDragon Administrator in reply to Kirstyrc]

For full Thyroid evaluation you need TSH, FT4 and FT3 tested 

Also both TPO and TG thyroid antibodies tested at least once 

NHS won’t test TG antibodies if TPO antibodies are negative

You will need to test privately

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

List of private testing options and money off codes

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

Medichecks Thyroid plus BOTH antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes both antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

cheapest option for just TSH, FT4 and FT3 and includes BOTH TPO and TG antibodies -£29 

randoxhealth.com/at-home/Th...

20% of Hashimoto's patients never have raised antibodies 

If both are negative request ultrasound scan of thyroid

healthunlocked.com/thyroidu...

 

Paul Robson on atrophied thyroid - especially if no TPO antibodies 

 paulrobinsonthyroid.com/cou...

[Kirstyrc in reply to SlowDragon]

Thank you, I will order an at home test to check TG antibodies too, then attempt to get an ultrasound if possible. Just worrying if my elevated TSH has just been one big flook and there is something else going on!

[Jaydee1507 Administrator]

4 weeks is quite soon to be testing after starting treatment or a dose increase. Once the levo has 'settled' it may well be that your TSH rises further. If you manage to get a dose increase (which you should!) then retest after 6-8 weeks next time.

The NHS often only test TSH, sometimes FT4, almost never FT3. In time you will need to look further into how your thyroid hormone is working for you and may need to buy private blood tests to see all 3 thyroid levels at once. Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

It can take many months to get treatment right, also raise vitamins to optimal. You still have work to do there and not likely on your final dose. All of this takes a lot of time.

[Kirstyrc in reply to Jaydee1507]

This comment has made me feel 10x better, thank you. I think after feeling rubbish for so long, I am trying to run before I walk! Will await to see what GP suggests with dosage and next lot of testing. I didn't consider that it could well increase again. I guess my tsh could be responding well to the current dose, but there may come a point where my body needs more!

[Jaydee1507 Administrator in reply to Kirstyrc]

I'm glad that helped. It's understandable that having finally reached the treatment stage you're expecting great things, but really its just the beginning of a new struggle to get the treatment right and further battles with your GP pushing for increases.

Did you get your antibodies tested yet?

[Kirstyrc in reply to Jaydee1507]

That's exactly it, I had a week where I felt much better, followed by feeling rubbish this week so I was almost disappointed by how low my TSH was in comparison. Its been such a battle with my GP, that I naturally worry about them neglecting me further as I now fall within their normal range. This is just a new battle, but I'll be patient! I will absolutely take your advice on waiting 6 - 8 weeks next time, rather than the 4 weeks he suggested. Waiting on antibody results and hoping they actually tested it in this round of tests, they've refused 3 times!

[tattybogle]

Hi Kirstyrc

If GP's says 'you're ok now TSH is in-range' then here is the ammunition you need :

healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-in-range

All those references are recommending GP's keep TSH between 0.4/0.5 and 2.0 / 2.5 in ALL patients on levo .....Some are taken from GP's 'update' sources , and one was written specifically for GP update by Specialist Registrars in Endocrinology and Cardiology ..So there should be no question of th validity / safety of that advice.

This shoe size analogy makes it easier to understand why TSH ' in the normal range' is not necessarily 'optimal' : healthunlocked.com/thyroidu... the-shoe-size-analogy.-*-

this may come in useful too :

"Does your GP play Golf ?

Ask him if he's happy with his ball 'in range' .. or whether he'd prefer it in the hole."

[Kirstyrc in reply to tattybogle]

This is really useful thank you, I'll get reading ready for my next appointment!

[Chrysali]

My TSH went from 42 to 8 in just 3 weeks on a dose of 50mcg. I am new to this, but I believe that the TSH is expected to go down to the very lowest point in the normal range.

[Kirstyrc in reply to Chrysali]

Good to know there are similar experiences. I honestly started wondering if the first tsh result was a flook. Where are you in your journey now?

[Chrysali in reply to Kirstyrc]

I was diagnosed just 7 weeks ago, and I used to think that, once I started levothyroxine, my troubles would be over, but now I am sure that many things may get worse before getting better. The feelings of sadness can be overwhelming, and so much patience is needed. My latest problem, just in the last 2 weeks, is swollen ankles. I am upping my swimming to combat this, and I found a video on YouTube which shows you how to massage your legs and ankles, this is very helpful. To anyone who is new to this, I would say that you can expect the unexpected and you must fight your illness with movement, whatever you can do and whenever you can manage it, even if it is just a 10 minute walk around the block, Everything you do counts, don't be overwhelmed. You can do something for yourself every day, no matter how small you consider it to be

[Kirstyrc in reply to Chrysali]

I can resonate with the getting worse before getting better comment, hopefully you start to feel better soon. Have you had a dosage increase yet?

[Chrysali in reply to Kirstyrc]

I had a dosage increase very early, after 3 weeks at 50 mcg, so I have been taking 75 mcg for a bit more than a month. Will go back to the doctor soon. Although my TSH was 1.2 a couple of weeks ago, I'm not feeling great and the excess weight feels like a heavy load. Perhaps I need a dose of 100 mcg?

[Kirstyrc in reply to Chrysali]

Perhaps your TSH is rising again, I hope you get another increase of feel better in a few more weeks with the 75mg!

[Judthepud]

I think you need to increase your Levothyroxine if you're still feeling rough. I didn't feel well until my TSH was 2 or below, but I suppose everybody's different. Hopefully your GP will be prepared to increase your dose. I'm currently on 125mcg four times weekly and 150mcg three times a week. It's not an exact science. Good luck.