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Thyroid fine but feeling terrible

(31 Posts)
ProfessorPickles Thu 07-Jan-16 09:17:01

I'm feeling a bit confused! I have an underactive thyroid and take levothyroxine. I hadn't had my levels checked in over a year for various reasons and I've been feeling shocking, just like I used to before I got diagnosed. Possibly worse!
So I had my levels checked and they've come back fine.
I've swelled up with water, feel exhausted, feeling dizzy and sick, getting shaky at times. Covered in bruises, feeling cold etc. Plenty of thyroid related symptoms so I'm actually a bit disappointed that my results have come back normal because now I haven't a clue what's wrong!
I've booked an appointment for tomorrow morning to see the doctor but just wanted a moan about it.
Any ideas what it could possibly be?

I feel so unwell I feel a little worried now

ProfessorPickles Thu 07-Jan-16 09:58:10

Shameless bump

ProfessorPickles Thu 07-Jan-16 11:51:46

Last bump attempt blush

Pleasemrstweedie Thu 07-Jan-16 13:15:20

How fine is fine? Never believe anyone who tells you your results are 'fine' or.worse still, 'normal'.

Go and get a copy of your results, with the reference ranges. it's your data and you're fully entitled.

Once you've got your results, post them on here and/or on the ThyroidUK forum on www.healthunlocked.com and see what feedback you get.

ProfessorPickles Thu 07-Jan-16 13:40:26

Thank you for the response, I will mention that I want to see the results tomorrow. Now I think about it they've actually got it wrong in the past, they told my dad he had 'no action needed' then it turned out they were wrong.
It's really annoyed me because I was certain that's what it was and because of that I was happy that it could be sorted!
I will update after my appointment.
Thanks for the link too smile

RubySparks Thu 07-Jan-16 23:13:55

Could you look at getting other tests done? B12 deficiency I think can have symptoms like bruising easily and extreme tiredness.

dontrunwithscissors Fri 08-Jan-16 16:15:50

The exhausted/dizzy/cold symptoms was how I felt when diagnosed with anaemia. I also take thyroxine & thought that it was my thyroid playing up. Have you had your iron etc levels checked?

Clarella Sat 09-Jan-16 21:08:28

I agree, with thyroid things you need to be aware and know your results. And this was advised to me by a consultant endo and professor near me. Track your results and how you feel.

Your symptoms could be other things too eg iron, b12, vit d etc. So do please go back to the GP. I had similar issues with a combo of low ferritin, vit d and slightly low thyroid. My thyroxine is tweaked to 125 one day 150 the next as a result.

BombadierFritz Sat 09-Jan-16 21:11:26

Normal means tsh under 4.5. You can go right down to undetectable levels of tsh, or at least to well under 1. The difference in how you feel could be substantial. I felt shit with tsh of 2.5 (medicated). Really you need all your results including t4 and t3. Good luck tmrw

Clarella Sun 10-Jan-16 18:56:12

I concur! I'm a wreck at 2.5. My tsh is currently 0.4 and I feel well.

The issue is that if your thyroid is completely kaput it won't make its own t3.

20% of the t3 we need comes directly from the thyroid, the rest is converted from the t4 that is also produced. However, no functioning thyroid, not quite enough t3. Therefore most patients need to be around or below tsh 1 to feel well, some even less.

This is clearly explained in an excellent BMA book by a top endocrinologist. As its BMA a GP would listen to it if you feel you need to return and discuss your results. The same guy wrote guidelines in the GP pulse magazine for gps to refer to. However, due to the wide range some think mid range is ok.

It's wise to check your tsh but also work with GP to eliminate other issues for the symptoms: ferritin (which really should be over 70), vit d, b12 (low can cause bad symptoms but also pernicious anaemia is another autoimmune issue) and if you can folate (though no one tested this for me).

Remember thyroxine can be tweaked eg an extra 25 every other day.

Also, allow 2-3 months before retesting. 3 is best as symptoms and blood levels change very very slowly. It's taken me 8 months to recover physically from a bad do with thyroxine and low ferritin despite good bloods 8 months ago.

Clarella Sun 10-Jan-16 18:57:22

http://www.amazon.co.uk/Thyroid-Disorders-Understanding-Family-Doctor/dp/1903474191

Quietlifenotonyournelly Sun 10-Jan-16 19:14:30

Watching this thread as I like op recently started to get the symptoms of pre underactive thyroid diagnosis. Had blood test 2 weeks ago and came back 'borderline' so GP increased dose an extra 25mg
I don't know much about underactive thyroid and how GPs dose.

HeyMacWey Sun 10-Jan-16 21:55:15

This thread is well time for me - I was diagnosed with post viral cfs/me over two years ago but in the last 6 weeks I developed a large lump approx 5cm x 3cm just above my right collar bone. Gp suspects thyroid or lymph problem. My bloods came back as normal and I'm just waiting for an ultrasound. I'm going to get a hard copy of the results tomorrow so I know exactly what my results are, however last bloods taken for monitoring were:

Free t4 = 16.0 range 12-22
Tsh level = 1.23 (0.4-4.0)

In October 2014 they were as follows:
Free t4 = 16.8
Tsh = 1.92

Ferritin was 114 and b12 221 (am self supplementing with sublingual to try and increase levels).

I worry that they won't investigate further or just put it down to the cfs/me.

HeyMacWey Sun 10-Jan-16 21:56:58

Oh and folate was 6.8 (3.0 - 20.0)

Clarella Mon 11-Jan-16 11:21:29

There is a difference regarding results depending on the context.

If there are lumps etc then GP is doing the right thing by monitoring. Do you have a referral to endocrinology?

If you have been started on levothyroxine then you need to be monitored and you need to work with the GP monitoring your own symptoms in order to get the right dose for you.

It takes time though - if started on a low dose of thyroxine it might take a few years for thyroid to slowly decline. Or it might be quick. It takes more time still as t4 (thyroxine) takes time to build up in your system, hence blood tests after 3 months - symptoms can sometimes take a while to correct too. Eventually though you will be completely dependent on thyroxine, as a type one diabetic is reliant on insulin. I use this comparison as a diabetic must be aware of their levels etc - it's actually similar for thyroid in my opinion. I've been hypo for about 18 years and only been well when I've kept a close eye on my dose, my results, how I take it, and more recently other things like ferritin an vit d.

The best thing I did was get the linked book (advised by mn) as it also details drugs that interfere with absorption.

Health unlocked are very helpful too as are the British thyroid foundation. Currently I find thyroxine (t4) good if I am at the right dose. Some find they need a combo of t3 and t4, but it's tricky as t3 has a very short half life. It's recommended that a good t4 be trialled for some time along side iron and vit d levels etc plus keeping fit before trying t3 - snd this isn't yet officially on the NHS.

The ideal medicine for us would be a combo t4 and slow release t3. But it doesn't exist.

Please do get the BMA book as it helps a lot.

Clarella Mon 11-Jan-16 11:23:45

Quiet life - what dose of thyroxine are you on? What was your tsh and t4 level?

HeyMacWey Mon 11-Jan-16 11:50:34

Thanks clarella.

Results today are as follows:
Free t4 = 15.5
Tsh = 1.79

Also have had thyroid peroxidase antibody level = <28 iu/ml (<60.0)

Ferritin is 121

Scan isn't til February. No refer all to an endo. Haven't been started on any medication.

I'll see if I can find the book in the library - in the meantime I guess I just need to wait till after the scan before going back to the gp.

Sorry for the hijack profpickles

Clarella Mon 11-Jan-16 12:38:42

I can't really comment on those results as technically they are within range and you have a functioning thyroid. It would be nice to see t3. It's a grey area but at least you appear to be being monitored. If you were on thyroxine is suggest a slight thyroxine tweak with those results and it symptomatic simply as you would be missing the thyroid production of t3.

I imagine a referral might come after the scan if needed. I hope all goes well there.

The antibodies are good - which is great. I don't understand what the test for three now as I was tested for antithyroglobulin all those years ago which was very high. I'm still unsure as to why that was tested as they don't seem to now.

Your ferritin is very good. Do you supplement?

Quietlifenotonyournelly Mon 11-Jan-16 12:51:28

Clarella dose is 125mg now. I have absolutely no idea what my results were, I just trust the GP to be correct.

Pleasemrstweedie Mon 11-Jan-16 13:24:25

"I just trust the GP to be correct."

That's a bit dangerous. Thyroid disease is generally poorly diagnosed and treated in the UK. You owe it to yourself to get copies of your results and to learn what they mean.

Quietlifenotonyournelly Mon 11-Jan-16 13:48:46

please there's a bit of a backstory to how I ended up being diagnosed, I know that my comment probably came across as a bit flippant but honestly I owe my previous GP my life and current one is very good too.
However, on reading this thread, it has made me realise that is important, I will ask for my results on paper in future smile

Clarella Mon 11-Jan-16 13:49:37

Unfortunately, unless the GP is actively treating symptoms, and says "how do you feel" you can't trust this.

This book http://www.amazon.co.uk/Thyroid-Disorders-Understanding-Family-Doctor/dp/1903474191 explains why and why you do need to keep track of results.

To paraphrase from the book; If on thyroxine the majority of patients do not feel well unless their tsh is in the lower range and t4 upper. So tsh 1 or below and t4 around 20-22.

An endocrinologist told me some people need it higher even than this. I know what my personal best dose is after trial and error, keeping note of symptoms and working with GP. Alternate days 125/150.

A British thyroid foundation survey found a very high percentage of gps were not fully aware of best treatment guidelines.

It's due to the blasted range being so wide. In other things eg ferritin, mid range could be OK as the range is 70-200 ish. Thyroid does not work like this especially if on thyroxine and with symptoms. The lab might print "within range", a GP might sign it off no further action.

This happened to me when actually I was severely constipated. I suffered for a year then went to GP. She actually said she'd have preferred a better previous thyroid result. It hadbt been addressed and I trusted the GP to know.

For example, tsh of over 2.5 is not recommended for conception due to higher likely hood of miscarriage.

I trusted the GP to know how to manage my pregnancy too, and they did not until I started questioning them and they dug out the guidelines.

A friend got to 12 weeks with no thyroxine raise and felt awful as she trusted them. This was actually potentially possibly dangerous for baby. The dose must be increased 30-50% in the first trimester.

Clarella Mon 11-Jan-16 13:52:14

Quiet - the extra 25 might be sufficient but I'd definitely find out what the borderline results were, and again at next test. Further tweaking might help you.

Quietlifenotonyournelly Mon 11-Jan-16 14:23:27

clarella I'm due for another test mid February for possible 'tweaking' as GP also put it.

I do tend to 'listen' to my body more nowadays as I realise before I just put things down to other factors in life such as stress at work etc.

Clarella Mon 11-Jan-16 19:16:20

Good stuff Quietly smile your GP sounds great.

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