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[AmandaJR]

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.

[Seasidegirl]

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.

[AmandaJR]

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.

[Seasidegirl]

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

[AmandaJR]

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.

[SundayGirl]

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  )

Seasidegirl - please ask for input from the well informed members at healthunlocked when you have your results.

Thyroid disease sucks.

[Seasidegirl]

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 🙏

[SundayGirl]

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 🤞

[Seasidegirl]

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! 

[Seasidegirl]

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. 

[AmandaJR]

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!

[Seasidegirl]

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? 

[AmandaJR]

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?

[joziel]

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.
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.

[SundayGirl]

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.