Annoyed😡: Well, I've been on levo now over... - Thyroid UK

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Annoyed😡

Natj123 profile image
31 Replies

Well, I've been on levo now over 2 months, self medicating with t3 for around a month!

After practically booking myself in for repeat bloods last Monday I rung for my results today!!!

Receptionist said 'all ok, repeat in 6 months!!!!'

So basically they don't give a shit how I'm feeling, they couldn't give me my actual results with ranges over the phone either! Will need to make a routine apt for that!!!

So 25mcg levo is sufficient for someone with undersctive thyroid?? I'm really not happy about this!!

I have an appointment on the 12 th !!!

On a brighter note I sent my ft3 bloods back to medicheck today,

Depending on my ft3 levels in considering going solo on t3 as I'm not really sure what the point of taking 25mcg levo is when I'm not going to get an increase!!!

Also is a temp of 34.5 normal for hypos?

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Natj123 profile image
Natj123
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31 Replies

Natj,

Your bloods were probably in range because of the T3 you have been taking.

Going to your appointment on the 12th will give you the chance to discuss this with your GP and get your results with ranges. I assume they don't know you are self medicating.

Many members function best with a TSH of 1.0 or below and T4 & T3 in upper quadrant of range.

It is still quite early days for your hormones to be settled. It took me months to feel well when I first started on Levo.

Being in a GP's "range", doesn't mean anything. Post results complete with ranges for members to comment whether there is room for improvement.

Your temp is low indicating low thyroid hormones.

Flower

Natj123 profile image
Natj123 in reply to

Thank you flower x

Natj123 profile image
Natj123 in reply to

Hi flower my tsh is 0.14!!

Wouldn't give t4 levels as because I'm on levo the lab will only give tsh results!!!

I'm beside myself here because that tsh is low and I still feel horrific!!!

I do not know where to turn to next x

in reply toNatj123

Natj,

Your TSH is fine. Members function best with a TSH of 1.0 or below when medicating on Levo and when T3 is added, the TSH sometimes drops lower.

Not having a T4 result is not the end of the world because T4 sometimes drops too and as long as T3 is high range, you should feel ok.

The reason you feel horrific is probably because you do not have high enough T3 or T4 hormone. Were you expecting the T3 results today?

Perhaps it will turn up tomorrow. It is probably worth waiting Natj as is very easy to take too much T3.

Hang in there & hopefully you will feel better soon,

Flower

Natj123 profile image
Natj123 in reply to

I only sent my ft3 test back to medichecks today so not sure when I will get results I've never done private before!! I though 0.14 was very low

Yes hopefully the ft3 will tell me more, thank you x

in reply toNatj123

TSH 0.14 is low Natj but without range difficult to tell.

But as medicating on T3 it is almost irrelevant anyway.

It is the T3 which is the biological hormone that alleviates symptoms that is so very important.

I haven't used this private testing labs do can't comment on time frame for expected results.

Flower

Clutter profile image
Clutter

Natj, contact the senior receptionist or practice manager and say you would like to collect a printout of your results and ranges if they won't give them to you over the telephone. If GP has authorised reception to tell you results are normal on the telephone there's no reason why you should be denied the actual results and ranges.

Natj123 profile image
Natj123 in reply toClutter

I will do that thank you clutter

Natj123 profile image
Natj123 in reply toClutter

Clutter, just spoke to surgery, my tsh is 0.14

She said because I'm on levo all the lab will give them is the tsh range!!!

Clutter profile image
Clutter in reply toNatj123

Nat, TSH is low because you are taking T3 and your doctor is satisfied that 25mcg T4 is sufficient because your TSH is low.

shaws profile image
shawsAdministrator

A low temp is usual in people who are hypothyroid. GPs appear unaware of this phenomenon as they are of any clinical symptom.

I posted this a couple of days ago and, myself, was surprised to find my temp was lower than it has been (I used to take it often but because I feel fine I've taken neither pulse/temp for ages). I've now increased my dose by 1/4 and after two days temp has increase by 1 point. Sometimes it doesn't rise to a 'normal' range but as near as.

healthunlocked.com/thyroidu...

Before the blood tests were introduced the temp test was one of the ways doctors diagnosed hypothyroidism, as well as other symptoms as well. Nowadays it's all down to where the TSH is and it has really not much connection of how the patient feels. P.S.I have no clinical symptoms of hypo and hope that remains.

25mcg levo is a miserable amount but if you've also been taking T3 your blood levels will have risen. We are entitled to a print-out of our blood test results. Phone and say you will be collecting it at ????? and could they have it ready for you as you require it for your own records. They might have to ask the GP first but that's o.k. We have to take control if we want to recover our health in the best possible way. Some surgeries charge a nominal sum but mine doesn't.

Natj123 profile image
Natj123 in reply toshaws

Oh shaws I'm really upset

My tsh has gone down to 0.14!!!

Then why don't I feel any better, I have no idea what to do now because my doctor only wants bloods repeated in 6 months!!!

The lab will only test tsh because I'm in thyroxine

I've sent off a medicheck t3 test today hopefully will have results soon x

shaws profile image
shawsAdministrator in reply toNatj123

The GP thinks you are on levo only so will be very surprised that your TSH is 0.14, so don't be upset yet.

Did you take the last dose of thyroid hormones about 24 hours before your blood test and fast and have the earliest possible appointment?

What dose of T3 are you taking and did you take it before your blood test too?

Have you had your antibodies checked - just in case you have an Autoimmune Thyroid Disease called Hashimotos.

thyroiduk.org.uk/tuk/about_...

Natj123 profile image
Natj123 in reply toshaws

Yes I did all the above, 25 mcg t3

I can't get anything checked until I see the doctor on the 12th

I really don't know where to go from here because shouldnt I be feeling ok with my tsh that low?

I'm far from it!!

I wish we could medicate by how we feel rather than numbers from bloods x

shaws profile image
shawsAdministrator in reply toNatj123

Blood tests don't tell the whole story and the main one is. They are too hung up on the TSH:-

Is the patient feeling better with diminished symptoms.

This is how we should be treated:-

web.archive.org/web/2010103...

I don't know if this will be useful and your head will be swimming with info overload.

thyroiduk.org.uk/tuk/thyroi...

shaws profile image
shawsAdministrator in reply toNatj123

So 25mcg of T3 is approx 75/100mcg of levo plus 25mcg levo which would mean your combine dose is around 125mcg levo. Next time I'd miss your dose of T3 the day before the test and take it afterwards.

Also ask for antibodies if you've not had them checked.

Natj123 profile image
Natj123 in reply toshaws

I'll do that, just read links too thank you shaws!!!

I was under the impression that the levo took weeks to get into your system but the t3 was quicker to notice?

Or do you play 'catch up ' with the t3 also

I'm wondering whether in a few weeks i will feel it then?

I hope I get my ft3 results soon

But I'll put money on it its high!

shaws profile image
shawsAdministrator in reply toNatj123

You are correct in that the dose of levothyroxine (the inactive hormone) you take today takes a while to leave your body gradually diminishing but you'd feel the effect if you stopped taking your daily dose. An excerpt:

T4 is converted into the more active T3 by the deiodinase system (D1, D2, D3) in multiple tissues and organs, but especially in the liver, gut, skeletal muscle, brain and the thyroid gland itself. D3 converts T3 into an inactive form of thyroid hormone in the liver.

T3, although it is absorbed into your bloodstream quickly and it goes directly into our receptor cells which have to be saturated, the effect of this 1 dose will last for between one and three days.

Natj123 profile image
Natj123 in reply toshaws

So basically I don't need to give the t3 time to work? Like the levo? I'm on my 3rd prescription for levo now so taken for 10 weeks almost. I know you should be patient with levo but surely after 10 weeks I should feel something?

shaws profile image
shawsAdministrator in reply toNatj123

I think your initial dose of 25mcg of levo was too low to make much difference. Normally it is 50mcg and a 25mcg increase thereafter until patient feels well. 25mcg is an incremental dose.

Sometimes it takes much longer to feel better than you would expect.

Millions of people must be well on levothyroxine but I suspect many get used to not being at their peak.

I think it does take a few months when on levo to get to an optimum and our minerals and vitamins must be at optimum too. I couldn't get better on levothyroxine because everyone is different.

Also because we're dealing with hormones and we are all different, it's not like taking a paracetamol for a headache for instance.

Levothyroxine is the cheapest method and most widely prescribed wordwide and T3 (in the UK) is exhorbitant and that's why, I think, many doctors don't prescribe. Besides rumours abound about NDT because it contains T3 and it has been in use safely since 1892. I think the pharmaceutical companies might have made false statements about NDT because they want to sell levo and they've been very successful in doing so.

Angel_of_the_North profile image
Angel_of_the_North in reply toNatj123

When you are on meds for hypo, TSH is really irrelevant. What's important are Free T3 and Free T4. If your surgery won't do those, you need to get the tests done privately (there are links on TUK with discounts). All low TSH shows is that nothing is prompting your pituitary gland to tell the thyroid to produce more hormones OR your pituitary gland is not capable of producing any more TSH (secondary hypo). It doesn't really reflect how you feel.

Natj123 profile image
Natj123 in reply toAngel_of_the_North

Thank you!!

I didn't get my ft4 tested because I assumed doctors tests would include it, but I sent my blood sample back to medichecks lab today

Not sure when I will get results though x

I understand your frustration with your GP but to be fair to your GP (and I slate mine most of the time) your dosage depends on what degree your thyroid is underactive. What were your results before meds? I've looked at your profile and you have a lot of posts so it's probably easier just to ask you direct ;) I've never been back to GP since self-medicating.

How much T3 are you taking on top of the 25mcg levo?

He/she thinks the job is done as you've responded to levothyroxine and your TSH is low-normal. They will never listen to your symptoms but I do wonder if you're over medicated. Only your FT3 test results will shed some light on this.

in reply to

Just seen you're on 25mcg T3. That equates to 100mcg you're on, which is quite a bit to get used to in 8 weeks levo and 4 weeks T3.

Edit: 100mcg equivalent i.e. 25mcg levo + (25mcg x 3 of T3)

Natj123 profile image
Natj123 in reply to

In not slating my gp really I was annoyed that they wouldn't give me test results until I'd seen him it got me all frustrated

In all honesty my gp has been good to me over the years, I'm suppose in still annoyed that I'm still feeling rubbish! I don't know where to turn next, all I want to do is lay on the sofa all day

I don't want to dress my kids, get oldest to school, can't be bothered to cook for them, it's awful I feel I should be enjoying them!!!

I just thought the t3 would make a massive difference to how in feeling but no! X

in reply toNatj123

I would be the same ha ha.

What were your results when you got diagnosed? I don't know whether you've increased too quickly or what but it took me 18 months to get a dosage equivalent to where you are now. Saying that my GP was only interested in my TSH being "in range" - usually at the top end of the range.

Natj123 profile image
Natj123 in reply to

Maybe I should wait a few weeks for my body to play catch up?

I thought it was only the t4 that took weeks for to feel the effects, I thought the t3 was much sooner?

My t4 was 10.5 and the range was from 11-22 I think

I'll find my tsh now xx

in reply toNatj123

In my own personal experience T3 is much faster acting than T4, but you must allow sufficient time for your body to stabilise. T3 will suppress your TSH quickly and that will mean lower T4 to T3 conversion, and also less hormone produced by your own gland. Just thinking about it and how I've felt with T3 also. See what your FT3 results show us.

Natj123 profile image
Natj123 in reply to

2.21 my tsh was in July

It's strange how it suppresses tsh when you don't feel any better :-(

I just want to feel normal , like everyone else here!!!!

I'll bet my life my ft3 will be high then ill be stumped!!! X

Glynisrose profile image
Glynisrose

You should ask the receptionist where she got her medical degree as she is NOT allowed to give results over the phone.

Natj123 profile image
Natj123 in reply toGlynisrose

The receptionist wouldn't give me anything, it was another member of staff who does the bloods and other things, I'm not actually sure of her role though x

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