Advice needed please

[Fendergurl]

Hi, I've just joined here so I hope I post this correctly.

I was diagnosed with hypothyroidism back in early 2011. For the most part my levels have been generally normal - with the exception of during my pregnancies, which has gradually seen me on a 150mg dosage. I take this first thing in the morning with water, and make sure not to have anything else for at least an hour.

Since my daughter was born 18 months ago I've felt constantly rotten, and of course to begin with I was fobbed off, told its just life with kids (I have 5 under 10yrs)

Finally managed to get bloods tests ordered in May, and was told the results were 'satisfactory, although borderline' and to get retested in 6 months. These were the results.

FT4 - 15.2 pmol/L

Date:05 May 2023 10:10 BST

Reference Range:10.5 pmol/L - 22 pmol/L

TSH - 5.65 mIU/L

Date:05 May 2023 10:10 BST

Reference Range:0.27 mIU/L - 4.2 mIU/L

I've gradually been feeling worse and worse, the main one is I am SO exhausted constantly, struggling to keep my eyes open through the day. I finally managed to get a blood form, these are the results.

FT4 - 15.6 pmol/L

Date:16 Nov 2023 09:45 GMT

Reference Range:10.5 pmol/L - 22 pmol/L

TSH - 7.04 mIU/L

Date:16 Nov 2023 09:45 GMT

Reference Range:0.27 mIU/L - 4.2 mIU/L

I checked my GP record and this time it has just been marked as abnormal. I have since submitted an econsult explaining how awful I feel and asking for help yet again. The GP is supposed to be reviewing it tomorrow and contacting me at some point, and I'm so worried I am going to be fobbed off, and told to wait and retest again in another 6 months. After reading on here I have seen that people advise taking the last dose of levothyroxine 24 hours before the test for a true result, unfortunately I did not know this before

I hoping I can find some advice on what to request from the GP, especially if they try fob me off. I don't feel like I can carry on feeling this bad constantly, it is making life miserable 😢

I'm sorry this post is so long, I just didn't want to miss any bits out.

I'd really appreciate any advice anyone could give, thank you in advance.

[greygoose]

Hi Fendergurl, welcome to the forum.

So, let's get this straight: you are on thyroid hormone replacement (levo - how much?) and your TSH is over 7, is that correct?

Well, given that the top of the TSH range is 4.2, I don't see how any doctor can possibly say that that is either 'satisfactory' or even 'borderline'. When on thyroid hormone replacement the idea is to get the TSH down to 1 or under. You are still very hypo, and your doctor is very ignorant! And there's not a lot you can do with such a high level of ignorance except put your foot down and insist that you want an increase in dose. Your treatment should be a partnership. You are allowed to say what you want of it. Your doctor is there to advise you, not dictate to you.

Unfortunately, the majority of doctors are very, very ignorant about thyroid and how to treat it, how to dose and how to interpret blood test results. Also about how to do the tests. But, just out of interest, how exactly did you do it? What time was the blood draw? Did you have eat before it? How long was the gap between your last dose of levo and the blood draw?

So that you know for next time, the blood draw should be early morning - before 9 am - with a gap of 24 hours (as you said) between the last dose of levo and the blood draw. That gives you the highest TSH, and the lowest FT4, which is what you need to get acceptable treatment. But, doctors have no idea!

[Fendergurl in reply to greygoose]

Hi greygoose, thank you for taking the time to reply.Yes that is correct, I currently take 150mcg levothyroxine.

The blood draw was at 9.45am, nothing to eat before it, only water. My last dose of levo was around 6.30am (I did not know then that it should be 24 hours before)

Unfortunately it would be almost impossible to get a blood test any earlier in the morning due to the school run, and the community hospital being a 10 minute drive away.

[greygoose in reply to Fendergurl]

OK, so your TSH is always going to be slightly lower than one would want, but impossible to tell by how much. The important thing in that case is to make sure you always do your tests at the same time of day for every test, otherwise you cannot compare results.

For the FT4, deducting 20% from that result would be a rough estimate of what it would have been had you left the required 24 hours, which gives us a result of about 12.

That said, none of that explains why, on 150 mcg levo, your TSH is so high and your FT4 is probably so low. It would seem that you're not absorbing it very well. Do you always take it on an empty stomach leaving at least one hour before eating or drinking anything other than water? Do you take any other medication or supplements close to your levo?

[Fendergurl in reply to greygoose]

My previous blood test in May was at 10.10am, my TSH then was 5.65mIU/L, this was the response from my GP about that one - Thank you for your recent eConsult request.; ; Dr H** has now reviewed and filed your test results as:; ; Borderline - satisfactory (TSH slightly elevated but T4 fine) Please repeat in 6 months.; ; She would like you to repeat these tests in 6 months time.

I do always get my appointments for as early in the morning as I can.

Yes I always take it first thing when I wake with water, leaving at least 1 hour. I have had the same routine for years and my TSH has always been under 2 mIU/L, with the exception of once during pregnancy, but my levo was adjusted accordingly.

[greygoose in reply to Fendergurl]

So, part of your problem is an ignorant GP! You cannot be considered 'borderline' if you are already on thyroid hormone replacement. That is a description of someone not yet diagnosed. And TSH is much more than 'slightly' elevated. Slightly over-range, yes, but she obviously doesn't understand how bogus the ranges are. A euthyroid TSH - i.e. of someone with no thyroid problems - is around 1, never over 2, and at 3 you are technically hypo. And, those that are hypo usually need their TSH lower, because they need their thyroid hormone levels higher than euthyroid.

Nor was your FT4 'fine'. It was below mid-range - and that with having taken it too close to the blood draw! You probably need it about 75% through the range. She really doesn't have a clue how to treat hypos, I'm afraid. Can you see someone else?

So, it sounds like your absorption has got worse. You probably have low stomach acid. Do you have any gut/digestion problems?

[Fendergurl in reply to greygoose]

Thank you for the information, that is very helpful to know. According to the message I received from the surgery on Friday it should be a different GP who reviews my results & econsult today, hopefully she is more helpful. No I do not have any gut problems, or at least not that I know about / have ever noticed.

[greygoose in reply to Fendergurl]

OK So, have you had your nutrients tested? Vit D, vit B12, folate, ferritin?

[Fendergurl in reply to greygoose]

No I have not, I am going to ask my GP for those when I get to speak to them.

[SlowDragon Administrator]

which brand of levothyroxine are you currently taking

Do you always get same brand at each prescription

Your results show you need 25mcg dose increase in levothyroxine and retested 6-8 weeks later

Meanwhile request GP test vitamin D, folate, B12 and ferritin levels

These are frequently low on levothyroxine, especially when under medicated

Are you currently taking any vitamin supplements

Do you know if your hypothyroidism is autoimmune

Usually diagnosed by high thyroid antibodies

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

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

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

See detailed reply by SeasideSusie

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[SlowDragon Administrator]

FT4: 15.2 pmol/l (Range 10.5 - 22)

Ft4 only 40.87% through range

May result showed you needed dose increase

Most people on just levothyroxine will need Ft4 at least 70-80% through range

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

[Fendergurl in reply to SlowDragon]

Thank you for taking the time to reply.I currently have TEVA levothyroxine. This is usually the same, however on the odd occasion it has been a different brand, unfortunately I do not have any old boxes to check what the other brand is.

No I do not take any vitamin supplements. I will request the GP runs the tests you've mentioned and look in to which vitamins I should be taking.

This is what my GP said in regards to the test in May -

Thank you for your recent eConsult request.; ; Dr H** has now reviewed and filed your test results as:; ; Borderline - satisfactory (TSH slightly elevated but T4 fine) Please repeat in 6 months.; ; She would like you to repeat these tests in 6 months time.

[SlowDragon Administrator in reply to Fendergurl]

GP is totally INCORRECT to say TSH is normal if over 2 on levothyroxine