blood test results!

[Lisalee123456]

I’d finally had enough this weekend and went to hospital and had bloods taken, I’ll post a picture of results my tsh is >100 they have decided to up my levothyroxine to 175mg a day but then continue blood tests and see how I get on…..

[HealthStarDust]

Your FT4 is horribly under range. Hope you feel better soon.

[Lisalee123456 in reply to HealthStarDust]

I’m hoping my increasing my thyroxine this will increase this also?

[HealthStarDust in reply to Lisalee123456]

Fingers crossed.

[PinkSkittles]

How are you typing with those thyroid results?! Are you bed ridden?

[Lisalee123456 in reply to PinkSkittles]

It’s definitely hard, I’m constantly exhausted! But trying to carry on as best I can but currently snugged up in bed with a cup of tea! X

[HealthStarDust in reply to Lisalee123456]

Bless you. Hang in there. We are all here. Believe me, as a bed ridden individual I have relied on the forum in my darkest moments, confusion and frustration 🫶🏽

[HealthStarDust in reply to PinkSkittles]

I’m bed ridden and I type. There is also voice enabled texting too.

[Lisalee123456]

these are the other tests done also

Blood test results 2

[Kowbie]

my goodness I can’t believe those results, it’s like your meds aren’t doing anything at all for you , hope you soon get sorted,sending big hugs to you

[greygoose]

It would appear that you're just not absorbing your levo. So, how do you take it? Do you always take it on an empty stomach, leaving at least one hour before eating or drinking anything other than water - coffee especially will affect your absorption?

Do you take any other medication or supplements at the same time as your levo?

[Marz in reply to greygoose]

I was thinking the same gg - hopefully the OP will let us know....

[Lisalee123456 in reply to greygoose]

I take other medication but well away from the thyroid- I take the thyroxine first thing in the morning 7.30 on an empty tummy and then leave a good hour or so before any sort of tea and breakfast- my other medication I take later on throughout the day as I didn’t want it to interfere with the thyroxine

[greygoose in reply to Lisalee123456]

OK So, have you ever tested your stomach acid level?

[Lisalee123456 in reply to greygoose]

No? How do I do that?

[TiggerMe Ambassador in reply to Lisalee123456]

Google 'Burp Test'

[greygoose in reply to Lisalee123456]

For the burp test, you'll drink half a glass (4 ounces) of cold water combined with a quarter teaspoon of baking soda, on an empty stomach. Then time how long it takes you to burp. If it takes longer than three to five minutes, the theory goes, you don't have enough stomach acid.

Copied from DippyDame 's post on this thread:

healthunlocked.com/thyroidu...

[pennyannie]

What has your doctor advised regarding your TSH @ 100 and a T4 @ 3 and under the range ?

Please contact your doctor immediately and request liquid T4 - as you can't continue like this.

The lack of absorption could be other medications, low stomach acid - and this all takes time.

Some people simply can't absorb these T4 tablets - and why there is the back up of liquid T4.

[Lisalee123456 in reply to pennyannie]

Hello lovely Thankyou for replying, so they up my thyroxine to 175mg a day, and said to return for bloods in 6 weeks- I’m going to call the doctors today as I’m still feeling the same. Does the t4 come from levothyroxine? So instead of a tablet form of the it will be a liquid form?

[pennyannie in reply to Lisalee123456]

As I mentioned in a previous post upping tablets that would appear not to be working is not going to solve this :

Yes - T4 is Levothyroxine - in tablet or liquid form - and the liquid used for babies and people who can't absorb the tablets well :

T4 is a lot more expensive in liquid form but that should not be the reason not to prescribe it -

You are below the accepted range - and with 1/2 a thyroid - and need an urgent follow up as the ' usual route back ' post surgery is not working for you.

[Lisalee123456 in reply to pennyannie]

Thankyou so much I’ve just emailed my consultant to see if we can get this prescribed, I actually have no thyroid at all, as the cancer was found on both sides then a course of radioactive iodine but since then I haven’t seen a endocrinologist just my oncology consultant I feel at least by now a year on I should of had some sort of follow up from endocrinology.

[pennyannie in reply to Lisalee123456]

Oh - apologies - a full thyroidectomy - which was what I first thought - but checked back to be sure of my facts - and got it wrong - sorry :

Ok - hopefully something will be sorted without too much more delay -

Can you also link your doctor into this email - as he likely has a ' direct line ' to endocrinology and you need an urgent first appointment - several months too late!

[pennyannie in reply to Lisalee123456]

Of course you should have been seen by endocrinology - probably a month orso after surgery and continual follow ups with blood tests and dose adjustments every 6 - 8 weeks as they worked with you finding the most appropriate dose of thyroid hormone replacement for you.

[Lisalee123456 in reply to pennyannie]

I haven’t seen a endocrinologist and I’m over a year on now since my first operation- slightly confused though recieved an email today from my oncologist who says my thyroxine dose will be ok for now but she doesn’t want to keep it that high for too long? So I’m guessing perhaps it will effect my cancer some how?

[pennyannie in reply to Lisalee123456]

Has she seen these results and does she know your T4 is at 3 and under the range ?

[pennyannie in reply to Lisalee123456]

Depending on the type of cancer diagnosed - suppression of the TSH - is required - which means a TSH down at the bottom of the range and a likely higher than average dose of T4 Levothyroxine -

Did you tell the oncologist that your TSH is not suppressed and that the TSH reading was way over the range at 100 and that your T4 came back under the range at 3 ?

Does this medical professional know that neither your TSH nor T4 are in the ranges which is the goal of the medicine prescribed ?

This is not about your dose of T4 - but the fact that you appear not to be able to absorb and utilise the T4 tablets and why you medication needs to be switched to liquid T4 - Levothyroxine.

[Lisalee123456 in reply to pennyannie]

Thankyou so much for your reply, I have follicular thyroid cancer hence why thyroid was removed etc, my oncologist has seen blood results I have more blood tests booked for the 12th April I suppose to see if by upping the dose it has made any difference, I feel like my oncologist my gp tell me different things so frustrating

[pennyannie in reply to Lisalee123456]

So what is your doctor advising ?

[Lisalee123456 in reply to pennyannie]

The doctor says before they look at absorption they will just keep upping the dose, I asked for liquid form but he said that before they look at why I’m not absorbing it they will just raise the dose??

[pennyannie in reply to Lisalee123456]

I'm sorry - but I think that is not in your best interests :

I am not medically qualified and this a patient to patient forum - and my health diagnosis in 2004 was Graves Disease - RAI thyroid ablation 2005 - and very different from yours.

[Lisalee123456 in reply to pennyannie]

I completely agree with you, I’m just unsure how to challenge it

[pennyannie in reply to Lisalee123456]

Can your doctor speak direct to the endocrinology team get an urgent referral for you ?

[helvella Administrator]

The NICE Clinical Knowledge Summary says:

Consider referral to an endocrinologist if a person is taking:

Adequate or escalating LT4 doses and the TSH level is persistently raised, and underlying causes have been excluded or managed.

Adequate or escalating LT4 doses and symptoms of hypothyroidism persist, and alternative causes for symptoms have been excluded.

cks.nice.org.uk/topics/hypo...

In my view, in your case, this should be re-worded as:

Must urgently refer to an endocrinologist...

To the point where an on-call endocrinologist is called. There is the possibility of a levothyroxine injection at least as a first step beyond where you are. But that would (I am sure) only ever be done in A&E by an experienced senior doctor or an endocrinologist.

[helvella Administrator]

I suggest you have a quick look at this paper:

Myxedema coma secondary to levothyroxine malabsorption in a patient previously submitted to bariatric surgery

europepmc.org/article/PMC/P...

Ignore the exact TSH result reported (206) because the difference between 100 and 206 isn't actually that great! Once TSH shoots up, it can rise very fast and high.

Also ignore the bariatric surgery. All that does is provide a reason.

With your results you are heading in this direction.

I'm sorry to be so blunt - but I want the doctors involved to realise, not upset you.

[Lisalee123456 in reply to helvella]

Thankyou that’s an interesting read, I think im going to push to see an endocrinologist as even after a week of higher dose I’m not feeling improvement at all.

[helvella Administrator in reply to Lisalee123456]

I'm not at all surprised. I'm sorry to say.

And leaving you in this state, even with an increased dose, for six weeks, is appalling.

You might not realise (I certainly didn't, and many others - including doctors - don't) that myxoedema coma is only rarely what we think of as a coma. People in that state can be sitting up and responding. But their ability to respond, react and cope physically and/or mentally is compromised, often severely.

[RedApple Administrator in reply to Lisalee123456]

Whilst referral to an endocrinologist does seem like an obvious step, the waiting lists are very long, so it could be many months before you get an appointment. You are absolutely not in a position to keep hanging on.

Your GP should, at the very least, be trialling you on liquid thyroxine right now. Simply increasing the tablet dosage and waiting another six weeks is clearly going to make you even more unwell. Your GP doesn't seem to be aware of the fact that thyroid hormone is as essential for life as food and drink.