Phone call fromGP: Hi everyone, I’ve just been... - Thyroid UK

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Phone call fromGP

Lisasue87 profile image
52 Replies

Hi everyone, I’ve just been for blood test today as been havin symptoms of muscle weekness and fatigue. The out of hours Gp just called and send she was very worried about my T4 level of 2.1 and I need to see the GP ASAP. What does this means and how low is that level? Thanks x

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Lisasue87
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ITYFIALMCTT profile image
ITYFIALMCTT

How very unsettling for you!

It could be a number of things (particularly if there are other matters in your medical history) and she obviously wants you to see a GP as soon as practical and I trust that she's put a note about this on the system so it's streamlined for you when you call tomorrow or they call you.

Please let us know what happens.

Lisasue87 profile image
Lisasue87 in reply to ITYFIALMCTT

Yes it’s a bit of a worry! What has alarmed me is how concerned she was about the level, but I have no idea how bad 2.1 is?

shaws profile image
shawsAdministrator

You haven't said whether or not you have been diagnosed as hypothyroid. I would think that's why she's phoning you.

You need a reasonable level of T4 as it converts to T3. T3 is the only Active thyroid hormone and that will probably be even lower.

I suspect your TSH is high and that's why she phoned.

SeasideSusie profile image
SeasideSusieRemembering

"T4 level of 2.1 ....... how low is that level?"

Impossible to say without the reference range.

Lisasue87 profile image
Lisasue87 in reply to SeasideSusie

She said it should be 11-21

ShootingStars profile image
ShootingStars in reply to Lisasue87

Is this Free T4 or Total T4? Without the full lab test range and knowing which test it is, it's hard to know if 2.1 is low and if it it should be 11-21, or not.

Lisasue87 profile image
Lisasue87

No this is the first test I’ve had. So will hopefully find out more when I visit the gp. Just trying to work out how worried I should be. All she said was my level was 2.1 and it should be 11-21

Treepie profile image
Treepie in reply to Lisasue87

Make sure you get the Results for TSH,FT4 FT3,ferritin,folate,D3,and B 12 then post for advice.

ShootingStars profile image
ShootingStars in reply to Lisasue87

If which ever T4 test she ran was run by itself, your GP does not have complete information about your thyroid and how well it is functioning. Like Treepie said, for the thyroid you need TSH, FT3 and FT4 ran at the same time. A complete and full iron panel, not just ferritin is what you need to determine your iron status. Also test D3 and B12, as Treepie suggested.

jimh111 profile image
jimh111

A free T4 of 2.1 is very low and would indicate you have an under active thyroid. I assume you are in the UK as some countries including the USA have different reference intervals. It's possible the doctor made a mistake as 2.1 is very unusual, we would expect quite severe symptoms with this level of fT4. Make sure you see your GP tomorrow and ask for a copy of your results including the TSH.

(If your blood test was carried out in the USA then an fT4 of 2.1 would be slightly high, they use different units.)

Lisasue87 profile image
Lisasue87 in reply to jimh111

Yes I’m I’m the uk. I’m really worried!

jimh111 profile image
jimh111 in reply to Lisasue87

IF this result is correct, not an assay error, then your thyroid hormone is very low and it would have taken a long time to get this bad. I would go to your GP tomorrow morning, just turn up and tell the receptionist what happened. Your doctor can give you a prescription for levothyroxine to supplement your fT4.

I think there may been some error with the 2.1 result but of course it is sensible to treat it as a correct result and get started on levothyroxine. If it turns out there was an error your GP can then stop the levothyroxine, taking it for a few weeks won't do any harm. Better safe than sorry. If I were you I'd try to get a good night's sleep and don't worry, you will be OK.

Lisasue87 profile image
Lisasue87 in reply to jimh111

Thankyou for your reply! I’m an anxious person normally so this is sending me a bit crazy tonight. I will make sure I get seen tomorrow to discuss things further. How long does the medication generally take to increase the levels or does it vary?

Lisasue87 profile image
Lisasue87 in reply to Lisasue87

i had a test in 2015 and all my levels were normal then

jimh111 profile image
jimh111 in reply to Lisasue87

IF your levels are this low it would take some time as they might want to take it slowly. Thyroxine has a seven day half life, so when taking a daily tablet you will have half the extra hormone after one week and three quarters after two weeks etc. But since they gradually increase the dose it can take a few months to get back to normal levels. However, we generally start to feel better after about a week.

humanbean profile image
humanbean in reply to Lisasue87

I’m an anxious person normally so this is sending me a bit crazy tonight.

Anxiety is common in people with hypothyroidism - it is a known effect of the condition. Getting it (the hypothyroidism) properly treated may help the anxiety to reduce or even disappear.

For a list of the common symptoms :

thyroiduk.org/tuk/about_the...

For a list of just about every symptom of the disease that has ever been reported :

hypothyroidmom.com/300-hypo...

Please be aware that nobody gets all the symptoms!

Lisasue87 profile image
Lisasue87 in reply to humanbean

Wow that would explain my heightened anxiety over the past few months! It was getting to the point where I thought I was going to need some medication to get it under control so I’m hoping that with th correct treatment for the thyroid issue, maybe that will lessen. Thanks for taking the time to reply. Looking back now, I have several symptoms x

SAUK profile image
SAUK in reply to Lisasue87

Hi Lisasue87

From past experience, please try not to get too worried. The worry can have a knock on effect on stress, sleep, eating, lifestyle etc. which can trigger you feeling more unwell.

I had a similar call from my GP practise and it turned out that she wanted to address the blood levels as a priority, but what she did do has helped.

I know it sounds difficult to do, but your GP had noticed the level problem and is actioning by wanting to see you. Try get that appointment asap, so it can rest your mind.

Like the other said, ask your GP for a copy of the blood tests and post those with the reference ranges and we can advise further.

Good luck

Lisasue87 profile image
Lisasue87

To be honest I don’t feel to bad other than muscle fatigue and general tiredness, but I put that down to just having had a baby 5 months ago. I shall repost tomorrow when I’ve seen the GP with an update and with the rest of my blood results. I’m going to try and stay away from google now as it’s scaring the life out of me!

Heloise profile image
Heloise in reply to Lisasue87

Hi Lisa, It's rare that anyone dies from low thyroid and there is good treatment for it so please don't worry. I'm glad you mentioned your pregnancy. We just had a wonderful seminar about hypothyroidism and this particular speaker talked about becoming hypo shortly after giving birth. I guess it is rather common. This is her website if you can search around a bit you might find some comfort and encouragement. I wish I could replay the talk but don't think it's available. drbrighten.com/

Lisasue87 profile image
Lisasue87 in reply to Heloise

Thanks so much for replying. I’ll have a look at the link, got plenty of time as my little one has decided he dosent need to sleep tonight lol x

Heloise profile image
Heloise in reply to Lisasue87

Aw, I remember those days, those wonderful days.

Keep learning about this because you can help yourself a great deal. Gluten has a great deal of effect on almost any autoimmune condition but especially thyroid.

Goldengirl01 profile image
Goldengirl01

My t4 level was 96 and the range should be 12 to 22 so I was feeling dreadful. GPS weren't listening to me at first and just doing the tsh which was coming back ok. Apparently it just stopped working along the line. I was feeli g dizzy nauseous sweaty in fact terrible and my heart rate was going bananas so I went back to go I tears saying I couldn't cope like this. He did no which was high and rang someo e at local hospital and told me to go there. They argued about as the was normal it should be ok and said please just do t3 and t4 so eventually he did and it came back really high. Consultant said if I'd waited any longer to see someone it would have been a blue light trip and my heart would have been damaged. So keep pestering gp if you know something is wrong.

Please do try not to worry I hope everything is going to be well with you. x

silverfox7 profile image
silverfox7

Try not to worry but don't overdo things either. They might just do another sample first in case something went wrong so you may have to go back the following day when those results are back. If you look on the Thyroid Uk site, they run this forum and the best I've come across but the site has loads of good info but shout out if anything you don't understand and we can help you along the way

jimh111 profile image
jimh111

Just had a thought that the very high levels of liver enzymes might be affecting the fT4 assay. There's a chap on this forum called Diogenes who may be able to advise.

Your doctor should be able to do some simple things like checking your pulse to see if it is consistent with hypothyroidism. It might be an idea to ask your GP to check the blood test results with the biochemist.

Lisasue87 profile image
Lisasue87 in reply to jimh111

They have checked my liver function also and nothing was mentioned over the phone but I haven’t discussed anything in detail yet.

My pulse is 48bpm today! I remember when I’d just had my daughter it was in the 40’s and remember thinking it was weirdly low

ITYFIALMCTT profile image
ITYFIALMCTT in reply to Lisasue87

You're putting the pieces together really well. You should be able to have a very good chat with your GP. Do you have a face to face appointment booked?

Lisasue87 profile image
Lisasue87 in reply to ITYFIALMCTT

No I rang today and apparently there is a note on my file from the ‘clinical administrators’ to call this afternoon and they think that will be to arrange to collect a prescription. However I’ve requested a call from the GP as I’ve said simply starting me on medication without even seeing me or explaining anything isn’t on! He receptionist sounded very annoyed with me!

ITYFIALMCTT profile image
ITYFIALMCTT in reply to Lisasue87

That happens far too often. I suspect that the prescription will be for 50mcg of levo. but you need someone to talk you through how to take it, when you need re-testing to tweak the dose etc. (the forum will make suggestions if the GP isn't forthcoming about the process).

When you pick up the prescription, request a copy of all your test results, please and post them here. Include the results for any vitamins and mineral levels (ron, ferritin, folate, vitamins B12 and D) that were tested, along with the FBC (full blood count). If they weren't tested, then you need to request them.

Lisasue87 profile image
Lisasue87 in reply to ITYFIALMCTT

Yes I will certainly do that. I had a huge variety of tests including all you have mentioned. Thankfully the GP i saw origanally was really thorough and helpful x

ITYFIALMCTT profile image
ITYFIALMCTT in reply to Lisasue87

It will be interesting to see what your vitamins and minerals are - and if you have any antibody results.

There is an art to taking the levo. - it has to be taken away from any food or drink (no caffeine). As you might know from any pre-natal or ante-natal supplements, f there are supplements, they sometimes need to be taken separately from each other - but, post your results, and knowledgeable members like Seaside Susie should be able to comment.

Good Luck! And post your test results when you obtain them.

Phoenix605 profile image
Phoenix605 in reply to Lisasue87

Many GPs are very poorly educated when it comes to thyroid disorder. Dont stick with a bad one, I saw 4 at my practice before I found one who was decent and will only see her now. If current one doesnt give you a good feeling may be worth giving the original one another try. Sorting out thyroid issues is slow and cant be rushed, you will get there but there is a lot of self education required and this forum is a great start.

Lisasue87 profile image
Lisasue87 in reply to ITYFIALMCTT

How urgently do you think I should be requesting an appointment face to face? As in today or whenever they can fit me in?

ITYFIALMCTT profile image
ITYFIALMCTT in reply to Lisasue87

Just replied above - tbh, no matter how annoyed the receptionist might be, an OOH GP phoned you last night and told you to see your own GP asap.

It's not acceptable to phone in a prescription without explaining your diagnosis to you or explaining the process that you'll be taking medication at a low dosage and then re-testing every 6-8 weeks and tweaking the dose, until you experience a resolution of your symptoms. Then you'll continue there with regular monitoring.

jimh111 profile image
jimh111 in reply to Lisasue87

Oh sorry, I got your post mixed up with another one re liver enzymes. Hypothyroidism can typically come on after pregnancy as the mother's immune system is somewhat suppressed due to the baby being 50% alien !!! (half the baby's DNA comes from the father, so the mother's immune response has to change or the baby would be attacked by antibodies). Some mothers suffer 'postpartum thyroiditis', a temporary form of hypothyroidism but your fT4 seems much too low for this. Your low pulse suggests hypothyroidism.

I believe the thyroid can become temporarily underactive (which is what a low T4 would imply) after pregnancy. It sounds like that is what might have happened. Usually it bounces back after a few months, but your GP will need to keep an eye on it, and you might need to take some thyroid hormone replacement tablets whilst it sorts itself out.

mayoclinic.org/diseases-con...

Lisasue87 profile image
Lisasue87

Thankyou everyone for all of your responses so far! I think I’ve found a fabulous forum and your all giving me fabulous info and advice which is really helping to put my mind at rest x

Emyloulou profile image
Emyloulou

Try not to worry which I know from experience is easier said than done. When I was diagnosed my tsh was 147 and my t4 was 4.something but 10 months on I’m getting there slowly. It does take time and I felt worse when I first started taking levothyroxine but it didn’t last long.

The very wonderful and knowledgeable people on this forum have been my lifeline and have helped no end with advise and support x

Lisasue87 profile image
Lisasue87 in reply to Emyloulou

That’s really reassuring Thankyou. It’s just so unusual for me as I’ve never had a medical problem before so it’s a bit out of the blue! X

Emyloulou profile image
Emyloulou in reply to Lisasue87

So was mine. I knew something wasn’t right as I was very tired but put that down to 12hr days at work and stress at home so just asked the gp to check my hb and vitamin D luckily he did the works. I never expected to get a phone call just a few hours after having my bloods done(the labs contacted the GP).

You need to insist on seeing your doctor who is hopefully a good one because it wasn’t just my thyroid that was a problem. I also came out with Vit D, ferrous fumerate and folate as these where deficient and you need to know what happens next. You also need your paperwork for free prescriptions.

Good luck, you’ll get there x

jimh111 profile image
jimh111 in reply to Emyloulou

Hypothyroidism causes deficiencies such as iron anaemia which corrects itself with supplementation when the hypothyroidism is addressed.

Lisasue87 profile image
Lisasue87 in reply to Emyloulou

This sounds very similar to me. My TSH is >100. Free T4 is 2.3!

Did you have any other deficiencies? X

Emyloulou profile image
Emyloulou in reply to Lisasue87

Yep, loads!!!

Vitamin D was 33 (50-100) I bought my own in the end because the guidelines only allowed the gp to prescribe 800iu and that was never going to touch it apparently. I only found that out because of this forum.

Folate 3.05 (5.4-24) I was prescribed folic acid.

Haemoglobin concentrate 95.0 (range 115-165)

Serum iron binding 3 (5-33)

Serum ferritin 6.6 (10-291)

I was prescribed ferrous fumerate 210mg three times a day.

I’m glad you’re getting sorted but don’t be surprised if it’s 2 steps forward, 1 step back for a while.

If you put a separate post with all your results on someone will come along and tell you what supplements to take to help yourself but be warned the free prescriptions that you now get do not outweigh the small fortune you will spend on supplements x

Lisasue87 profile image
Lisasue87

Hi everyone. So I had a phone conversation with the GP (at my request!) they were going to just prescribe me thyroxine and not tell me much else! He was nice but not overly informative. I collected a copy of my blood results. But they didn’t include my tryroid function test would you believe! Although the GP told me my TSH was >100 and my T4 was 2.3.

The rest of my bloods I was told we’re normal however when I’ve looked they don’t appear to be. The abnormal ones are as follows:

VIT D - 43. Normal range ( >75)

Erythrocyte sedimentation rate - below range 1mm/h (5.0-11.0)

Serum creatinine above range 102 umol/L ( 45-84)

EGFR using creatinine -below range 63ml/min (90-200)

Serum creatinine kinase level above range - 314 U/L (25-200)

Serum folate 1.9ug/l (2-18.7)

I’ve booked a GP appointment for Monday, at my request and I’m ready to go armed with questions if anyone has any advice on what to ask?

Thanks again

helvella profile image
helvellaAdministratorThyroid UK in reply to Lisasue87

Lisasue87,

EGFR is a measure of kidney function. Low thyroid hormone levels can impact on kidney function so it is not surprising you are not at the top of the range. This should increase in time with adequate thyroid hormone treatment. Keep an eye on that but do not panic.

If folate is low (which it is), you really need a B12 test as well. You should NOT start taking any supplementation for this without knowing if you need B12 as well.

I notice no iron-related tests (e.g. ferritin), nor Full Blood Count. Some of the FBC tests are relevant to folate and B12, others are relevant to iron, so important to get done.

Lisasue87 profile image
Lisasue87 in reply to helvella

That’s really helpful Thankyou. All FBC, vit b12 etc were done and normal. That’s good that the kidney function is likely to improve as seeing that result was worrying. It was making me wonder if there was something else underlying?

Should I be on a vitamin D supplement also?

helvella profile image
helvellaAdministratorThyroid UK in reply to Lisasue87

Lisasue87,

Please get the actual results. For example, B12 might have a range 170 - 800 (made up - but they vary and are often something like that). 175 is "normal" in the sense of being in range, but should most definitely be addressed!

Similarly, a very "normal" Mean Cell Volume, smack bang middle of range, can be due a combination of iron-deficiency and B12-(or folate)-deficiency. Low iron pushing the cell size to be small; low B12 pushing it to be large. The net effect being "normal" but in someone with TWO significant deficiencies. (Hint: a high RDW value can reveal this possibility.)

Lisasue87 profile image
Lisasue87 in reply to helvella

More results ( I have updated on a different thread but will post here also)

HB 137 (125-148)

Wcc 5.9 (4.5-13)

Platlets 236 (140-400)

Rbc 4.45 (3.83-4.98)

MCV 95 (84-99)

MCH 30.8 (27.5-32.5)

B12 344 (197-771)

Folate 1.9 (2.0-18.7)

Ferritin 24.4 (20-130)

Hba1c 34 (23-41)

sja11 profile image
sja11

You need folic acid, iron and vitamin D. The D should be taken with vitamin K mk7. If you’re breast feeding ask advice before taking vitamin D.

I’ve found giving up gluten makes my thyroxine much more effective.

Good luck

louise453 profile image
louise453

I was diagnosed with hyperthyroidism I’m now on 100mcg I recently found out I have osteoarthritis among lots of other things that are wrong with me will I stop being in so much pain x

Valarian profile image
Valarian in reply to louise453

100mcg of what Louise453, and was it prescribed by your GP or an endocrinologist? Do you know your blood test results ?

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