Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Seasidegirl on November 02, 2024, 08:48:16 AM
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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 🙏
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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!
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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.
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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.
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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.
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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?
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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.
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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
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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.
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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. ☹️
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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!
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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.
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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.
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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?
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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 :)
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Sorry Seasidegirl, I didn’t mean to sound so gloomy! Today has been a tough day but not every day is, in fact most days are really good/normal!
I have hyperthyroidism, cause not identified, not autoimmune and no goitre. Trying to find the cause has delayed treatment which hasn’t helped.
Hyperthyroidism is very treatable, your GP can prescribe medication to ease symptoms whilst they investigate. The thyroid ultrasound scan will identify the goitre so you’re on the right path.
Are you managing to get decent sleep?
Please try not to worry, it sounds like you have a good GP and that’s been my best support.
Have a look at the thyroid section of Healthunlocked dot co dot U.K( not sure if links are ok here), they are fabulous and will help you.
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Thanks Sunday Girl and Amanda
I've only had TSH and T4, apparent the lab only does T3 if they think it's relevant and my T4 is OK so they didn't do it. No antibody testing
My GP is really good unlike the one I saw previously so I'm sticking with her.
Sleep - pre HRT my sleep was very poor and I'd wake a lot and struggle to get back to sleep. I do now sleep better in terms of quantity, I wake quite frequently and pee a lot, the quality isn't good though, usually 30-40 minutes deep sleep and I bet rarely feel refreshed.
Sorry today was a bad day Amanda, I really hope you get yours sorted.
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Morning Seasidegirl, the lab not following my GP’s blood test request in early 2022 meant I continued to treat as peri and hyperthyroidism wasn’t discovered for ten months. Please consider Medichecks so that you’ve got the full thyroid panel results at the same time as your US scan results. I’ve read that GP’s often don’t accept private results but that wasn’t my experience, they ran their own full tests to verify my private ones which was good.
Broken sleep/peeing, same here - HRT helped but two pumps wasn’t enough for me. The peeing got worse, then VA started. I used Vagifem and Ovestin for two weeks and increased to 4 pumps. Luckily that stopped VA and I only use Oestrogel now. Sometimes I still get up once a night but it’s rare. I find that the heart issues from hyper are far better if I’ve had better sleep.
Are you struggling with insane energy & debilitating fatigue, tremor, anxiety, scary heart rate, feeling hot, irritable, constant hunger, weight loss?
Is your scan this week? Hope you get answers soon so that treatment/relief gets you back to normal fast.
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Morning Seasidegirl, the lab not following my GP’s blood test request in early 2022 meant I continued to treat as peri and hyperthyroidism wasn’t discovered for ten months. Please consider Medichecks so that you’ve got the full thyroid panel results at the same time as your US scan results. I’ve read that GP’s often don’t accept private results but that wasn’t my experience, they ran their own full tests to verify my private ones which was good.
Broken sleep/peeing, same here - HRT helped but two pumps wasn’t enough for me. The peeing got worse, then VA started. I used Vagifem and Ovestin for two weeks and increased to 4 pumps. Luckily that stopped VA and I only use Oestrogel now. Sometimes I still get up once a night but it’s rare. I find that the heart issues from hyper are far better if I’ve had better sleep.
Are you struggling with insane energy & debilitating fatigue, tremor, anxiety, scary heart rate, feeling hot, irritable, constant hunger, weight loss?
Is your scan this week? Hope you get answers soon so that treatment/relief gets you back to normal fast.
Thanks Amanda, yes to all of those symptoms low energy, not high, I am the classic tired all the time.
Interesting re sleep improving heart rate etc.
My scan is on Wednesday, GP has arranged further bloods but not thyroid as the nurse overlooked them🙄 I'm not quite sure what these are as it isn't clear on the app.
Also heart monitoring this week but I don't think that is going to show much other than elevated heart rate which is difficult to evidence. My fitbit doesn't show any oddities.
I think this GP would be open to private blood tests so I'll look at these after the scan.
Thanks again
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Hi Seasidegirl, it sounds like your GP is good, that’s great to read because many thyroid patients get awful care - that’s what I’ve come across from two years of thyroid research. Fatigue is awful, especially if your sleep is compromised with pee stops and then the stress of getting back asleep makes falling asleep even harder.
The constant hunger is tough, I was eating twice that of my boyfriend and calculated daily calories at a whopping 6000 yet still losing weight. That eased a bit when I increased protein and veg intake but I still eat 6 meals a day.
Once i sorted the peeing out which got me more sleep I noticed the anxiety and heart rate (mine was 160 on waking), irritability were better the next day, but 1 bad night and the symptoms were full pelt again.
Getting the full panel will show you how your thyroid is coping. Many people don’t fit into the set ranges and some have symptoms whilst some don’t. I’ve got 10 times more T3 than the range, 0 T4 and an undetected TSH yet I returned to work full time, enjoy life, run etc. we’re all different.
Wednesday scan should mean the results are with your GP and viewable on the Patientsknowbest/MyCare Website by Friday.
GP heart rate didn’t help me much either but worth doing.
Good luck for Wednesday, please let us know how it goes.
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Afternoon Amanda and Seasidegirl :)
It's all too true that thyroid patients don't get the care that they need from their GP's which is why healthunlocked is a really good resource.
It's a lottery as to getting a GP who will listen to you or a GP who is fixated on what the computer says.
My GP looks at my private results and says ok but.......... And we then agree to disagree.
(My TSH has been below range for many years now but woe betide anyone who tries to alter my Levo dose ;D)
Seasidegirl - please ask for input from the well informed members at healthunlocked when you have your results.
Thyroid disease sucks.
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Amanda, Sundaygirl, thank you so much both of you for the info you are fab! 🙏
Health unlocked is a great resource, I hadn't found it before.
I hadn't understood the importance of understanding why my thyroid is overactive (if it is 🙄), I now know much more.
I have the Kardiacare gadget but as I expected, it's showing normal sinus rhythm.
I'll go for the scan on Wednesday and assuming I get a non sinister result I'll book the Medicheck full Thyroid plus nutrition panel ASAP.
Re Patient knows best, I'd never heard of that, I use the NHS app but there is often a long delay and/or the hospital results don't go on there. I've registered with PKB but I can't work out how I get the results on there? Will they appear now I've registered.
Thanks again, I really appreciate you taking the time to help me 🙏
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If you can hang on for a couple of weeks before you order your Medichecks blood kit ....... Black Friday is coming and there's usually some deals ;)
If you can't wait, you can find discount codes easily.
Good luck with the scan tomorrow 🤞
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Thanks, I've found a 10% code.
Interestingly I'm using the Kardiacare gadget for the first time and it's immediately flagged tachycardia. There's me thinking it's a waste of time!
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So, thyroid scan looks positive, nodular goitre with cystic tissue and vascularity, nothing sinister - phew!
ENT consultant said it is possible that the goitre is producing thyroid hormone which is contributing to any over activity. He confirmed that I need to talk to my GP and ask to be referred to endo as my THS is low and I'm symptomatic.
I'm seeing the GP on Monday and she has already indicated that she is willing to refer so hopefully that will happen.
I'll then try to find out what the wait is and then decide if I want to pay for a private consultation ideally with someone with an interest linked to menopause. I'll also do the full thyroid thyroid bloods shortly.
Once I can see the details of the thyroid scan I'll post on Health Unlocked.
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That’s great news Seasidegirl, nothing sinister = huge relief!
Blood tests will show if the nodule is producing thyroid hormone causing your symptoms. They might do an Uptake Test to show activity, it’s quick and painless.
Good luck for Monday!
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Thanks Amanda I am hugely relieved to be able to cross something off the list!
Which blood tests will show if the module is producing thyroid hormone? Will it show on the Medicheck Advanced Thyroid panel?
I read about the thyroid uptake test on health unlocked which presumably will need to be via Endo rather than the GP?
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I totally hear you there! I was told at the US scan that my thyroid is unremarkable and the relief was immense!
The Advanced Thyroid Test will give your T4, T3, TSH and two antibody’s which I think are called TG and TPO. Sometimes nodules are called ‘hot’ because they are creating additional thyroid hormone which can create symptoms. The blood test can’t diagnose the hot nodule activity but I think the Uptake Test does.
Healthunlocked know far more than me but I think the above paragraph is right-ish. It’s difficult because I’ve been tested for everything nodule related but thyroid nodules haven’t been found.
On Monday I’d ask the GP to run the full thyroid panel due to your scan results and refer you to an endocrinologist. The wait might be months but you can choose a hospital further away if the waiting time is less. I’m in England. I don’t know if those in Wales or Scotland can choose their care location.
Yes the Endo ordered the Uptake Scan and I offered to travel anywhere for it as I would’ve waited 6 months for local hospital. It took 2 weeks and I travelled to Kettering for it.
How are you feeling symptom wise? Is the cooler weather helping any?
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Just as an example, I am now about 10 weeks after coming off thyroid meds (which included a large dose of T3 at 45mcg). So my thyroid has been kicking back in and re-starting.
I tested 6 weeks after coming off and results were much worse than before I went on, so I haven't recovered yet:
TSH 2.38
free T3 2.6L (3.1-6.8)
free T4 12.3 (12-22)
Total T4 64L (66-181)
rT3 17 (10-24)
Reverse T3 ratio 0.15
You'll see there that my TSH is completely normal. My free T4 is on the low side but is within range. It's only when you look at the T3 that you see how much I'm still not recovered.
This just to show you the importance of getting that T3 test done. It is the most important thyroid hormone. The body converts T4 into T3, so T4 by itself tells you nothing.
I just did another test this morning (another 4 weeks later, so 10 weeks since coming off) and I'm really hoping things have improved. I haven't repeated the rT3 because that's an expensive test (this was done with Blue Horizons, the Platinum test which is one of the few that includes rT3) and my priority first is to see my T3 in range.
At some point, if I don't recover within 6 months of coming off, I will need to figure out whether I should re-start some meds. But since my T3 was always in range before (just on the low side often) I am hopeful I will recover further.
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Seasidegirl - It must be a relief to know that there's nothing sinister going on with your thyroid.
Next step is to get those bloods done to find out what you're dealing with.
As joziel said, your T3 level is important but you need the whole picture.
It's possible that you have Hashi's. In the early stages your TSH and frees will jump around and sometimes look like you are hyper, sometimes like you're hyper. That's why checking antibodies is important.
Joziel - be interesting to see your next results.
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Thanks Amanda, Joziel and Sunday Girl, I really do appreciate the guidance and your expertise.
It's so interesting that TSH can be in range but T3 which my GP can't get the lab to test, is out of range.
I definitely think mine varies and is linked to my menstrual cycle, the "good" GP describes it as a brewing overactive thyroid. I think it's been teetering on the edge since 2016 and now taking HRT has pushed it either closer to the edge or over the edge - or it was because it was already overactive which is why I ended up on HRT as I couldn't cope with the symptoms 🤷♀️
GP on Monday, then I'll get the full panel of bloods done privately and make the decision about the private referral.
I don't have the ENT report yet, my county doesn't use PKB as far as I can see.
Once I've got that and the blood results I'll post on health unlocked.
I don't like to say it, but whilst my heart rate is elevated as it usually is at this stage of my cycle, I think I feel ever so slightly less poorly this week (since before the scan so I don't think it's the relief of that). I'm at 5 weeks off testosterone so whether that's helping or something else or I'm imagining it - dunno this stuff really does fry my brain!