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[Seasidegirl]

I know there are some knowledgeable people here. 

My thyroid TSH is on the bottom number of the reference range.    GP (female, small build like me) is happy to recognise that it's not necessity "normal" for me as I'm symptomatic.

ENT who are looking at my thyroid lump disregard the thyroid function as it's in range and also my SHBG which is 4 outside the reference range as it's "close enough"

I've read the info that reference ranges only fit 95% of people but I'm struggling to fight my corner based on this argument. 

Can anyone explain this in more technical detail that would help me be more persuasive please? 

I'm really tired of all this and just want to feel well, I'm also worried about the cardiac and bone density issues of a sub clinical hyperthyroid.

Would be grateful for some help 🙏

[Dramy3]

Hi
Could you post your TSH, T4 and T3 results (along with the reference levels from the lab)? I can probably lend a hand as I've worked quite a bit with various thyroid conditions.
Sorry your ENT is being a pain in the arse!

[Seasidegirl]

Thanks Dramy

I don't seem to be able to post screenshot

TSH 0.27 (ref range 0.27- 4.2

T4  17 (ref 12-22)

No T3

SHBG 131 (ref 27.1-128.0)

(All done on different dates)

As I understand it,  it's not unusual to have normal T4 with an abnormal TSH particularly in a sub clinical hyperthyroid. 

[Dramy3]

Hey

This is tricky as you say. The dr is following the NICE guidelines and most hospital management algorithms for possible subclinical hyperthyroidism. Here's a summary of the NICE guidelines:

Basically, you have to have a goitre/nodule or symptoms of high thyroid hormones (which you have) + 2 low TSH tests done at least 3 months apart. Without that, you will struggle to be referred to an endocrinologist. Insist on that second test in 3 months and if the level is just as low, and your symptoms are still there, then you should be able to justify a referral to an endocrinologist. That said, if your thyroid levels aren’t explaining the thyroid nodule/goitre, then you should be referred for further investigation (ultrasound most likely) to rule out anything sinister. Your SHBG is too close to the reference range to be clinically relevant I would imagine. The tests are a bit unreliable if you are taking medications for an acute condition or in hospital with illness, etc. If any of that is remotely applicable, there is certainly reason to test again or at least refer to an endocrinologist.

I know it's not what you wanted, but hopefully the lump is still being actively investigated? I would imagine when that is clearer, they will refer you to an endocrinologist anyway. At the very least, you have a good argument for another TSH/T4/T3 test in 3 months.

Wish I could've been more helpful.

[Seasidegirl]

Thank you 🙏

That's really helpful to know.   I'm definitely symptomatic aside from the goitre and my TSH has been low (but not this low) for 7 years.   

 I thought that the symptoms were peri, I'd been avoiding HRT as I've had DCIS, finally took it in May,  my symptoms resolved for prob 7 glorious weeks where I felt fab but then returned with the added bonus of the goitre 🙄

Thank you for your help,  it is much appreciated,  hopefully I'll know more midweek after the ultrasound and then I've got a GP appointment the week after. 

If needs be I'll pay for an endo referral,  I'm very sure that my thyroid is not normal enough for me. 

[CrispyChick]

Just curious - do we think endocrinology will have a different approach, should you acquire that elusive referral?

Are they more likely to consider issues within ref range?

[Seasidegirl]

Just curious - do we think endocrinology will have a different approach, should you acquire that elusive referral?

Are they more likely to consider issues within ref range?

I think what I'm looking for is confirmation that my thyroid is potentially overactive for me.  To then try treatment and see how I am.   

HRT worked well for a bit but now isn't dealing with some symptoms, I've tried increasing the dose and that doesn't help.   It is resolving my joint pain and overwhelm but the low mood, fatigue,  elevated heartrate etc. remains.   I'm reasonably sure I'm absorbing (because of the improvement in some symptoms) but I'm a walking checklist for the other high thyroid symptoms. 

There appears to be a view that HRT supports and improves thyroid function which in my non medical brain makes it possible that mine is now overactive but anyway these were also the symptoms that pushed me reluctantly to HRT in the beginning.

There is a consultant at the endo centre I want to go to who has a specific interest in the interaction of thyroid and sex hormones at menopause. 

[CrispyChick]

Great. I really hope you can get your referral.

I've just had an endoscopy referral as I seem to overreact massively to all hormonal changes and never feel well. Not convinced they're going to help... but we shall see.

Can you privately refer to that particular consultant, if need be? X

[Seasidegirl]

Thanks CrispyChick, I hope yours works out.   I think when something is just "not right" , its really difficult and incredibly time consuming to get to the bottom of with NHS silos and processes. 

I need to get the results from this week's ENT appointment first to rule out anything sinister 🤞
They have said they have no interest in the thyroid function 🙄

I've then got a GP appointment at the start of the following week,  where she has said that she'll refer me to endo if the lump is benign as I'm clearly symptomatic and we need to understand why I've got the ever increasing goitre.  I'm sightly concerned that the practice as a whole is currently very resistant to any referrals/ bloods etc and that she might get told not to refer based on the NICE guidelines that Dramy has set out.   

If GP doesn't refer and/or if the wait is going to be significant I'll fiund the private referral, I can't as yet find the specific consultant on a private listing but I'll ring the endo centre and ask when I know what the score is.   

[CrispyChick]

Good luck seasidegirl.

I totally head you. I've been on this merry go round for 8 years and I've been to many consultants in that time. Currently paying privately for meno gynae. But since the treatment is just making me as bad, that's how I've got my endocrine referral.

I note my original post says endoscopy. 🙈 Predictive text. I have however been for endoscopy through all this. 🙈🙈

The silos are definitely a problem. I'm now second guessing which expert dept to see as my GP is at a loss. But she is good, she does refer me. I just keep going back.

But even with a referral it all takes months and months. ☹️

[Dramy3]

Thank you 🙏

That's really helpful to know.   I'm definitely symptomatic aside from the goitre and my TSH has been low (but not this low) for 7 years.   

 I thought that the symptoms were peri, I'd been avoiding HRT as I've had DCIS, finally took it in May,  my symptoms resolved for prob 7 glorious weeks where I felt fab but then returned with the added bonus of the goitre 🙄

Thank you for your help,  it is much appreciated,  hopefully I'll know more midweek after the ultrasound and then I've got a GP appointment the week after. 

If needs be I'll pay for an endo referral,  I'm very sure that my thyroid is not normal enough for me.

Best of luck. I know Medichecks offers a Thyroid Function Blood test that measures TSH, T3 and T4 and it's £45. You'll need to pay for a venous draw but they have clinics listed on their website so that should be easy enough. It's another £30-40 though. However, might be worth it. Medichecks also use the same reference ranges as your previous tests so that's helpful. I'd wait at least 6 weeks from your previous TSH before doing another--that seems to be the minimum time between tests for endocrinologists to believe it isn't just a blip that will resolve itself.
Good luck with the thyroid lump check--sounds like it's all going to be fine on that front, but never a nice waiting game!

[Seasidegirl]

Thanks both,  Medicheck seen to have my local hospital listed so that would be useful. 

I'm getting my HRT privately and added testosterone about 5 weeks so their suggestion is to test as much as possible at 3 months (from 5 weeks ago) so including oestrogen, progesterone testosterone  SHBG and the full thyroid tests etc. and see what the whole lot looks like together. 

Depending on progress I might well just do the thyroid panel before then.  My original TSH was early September so I'm close to 8 weeks from it now,  so it might be worth looking at now to see what it looks like.

[AmandaJR]

Hi Seasidegirl. I’m no expert but I understand how difficult it is to manage peri and hyperthyroidism. Like you I put the hyper symptoms down to peri.
Your thyroid ultrasound should bring you some answers, I’ve had three this year: they are quick, painless and the results are fast.
Medichecks are great, I still do a monthly Advanced Thyroid Panel test to compare with the thyroid panel the hospital do. My results are the same whether I do a blood draw or a finger prick test. Has your GP run autoimmune tests or T3?

I found Propanolol useful for reducing heart rate but found little help for other symptoms which are hard work.

Getting seen by an endocrinologist can take months, seems to a postcode lottery. I’ve had 6 appointments with an NHS one and 3 private, due to the enormous amount of tests/MRI’s etc I’m glad the NHS supported me.

Good luck with the scan.

[Seasidegirl]

Thanks Amanda, your experience doesn't fill me with hope!

Do you mind sharing are you being treated for hyperactive thyroid or is it more complex than that? 

[SundayGirl]

Hi Seaside girl

I would second the suggestion to get a full thyroid panel from Medichecks.

There is no need to see anyone to get blood drawn, fingerpr1ck samples work just as well (once you have the knack)

In my experience, a goitre is usually connected with hypothyroidism but you really need a full panel, which includes antibodies, to get the whole picture.

A low TSH could possibly indicate hyperthyroidism, but not necessarily.

As for worrying about your TSH, 1 in 20 people without thyroid disease fall outside the 'normal' range.

A word of caution. NHS GP's tend not to look favourably on private blood results even though a full panel is rarely ordered by them. Or if it is, the lab often overrides the request and just does the bare minimum.

Good luck