I finally have an NHS endo apt (which they cancelled but I begged to get reinstated) and wanted to be armed with questions - can you help?
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Short story is I've been battling joint/limb pain/numbness for 5 years and been through many departments and had MRI/PET SCANs - all clear. MS/Rheumatism/Lupus...all checked and tested. I've even been put on steroids!
Now during these investigations, sub-clinical hyperthyroidism was found and I had to fight the GP for levothyroxine - I felt better on this however still get pain. I'm currently on 50mg.
Now my inkling is all my issues - pain, cold, dry skin etc is all thyroid related.
TSH has danced around 4.97, 4.6, 3.98. 7.16, 3.06, 1.79, 2.93, 5.02 over last 2 years (latter this week's reading)
I REALLY FOUGHT GP as had an inkling for TPO which turned out to be 266 😱😱😱
I had a ultrasound scan in Oct of my thyroid that showed....a pretty ravaged thyroid.
Now as my TSH levels are "near to range" the NHS endo rejected my referral as said I couldn't possibly have thyroditis (ultrasound - hello?!) but I have battled to get him to change his mind and see him.
I'm worried that this apt will be a waste of time and I need to see someone privately but is there anything he can do or things I should be asking to see if my thyroid can be better managed and hopefully I'll feel better? I'm thinking I have a hashimoto issue in which case is it best to try and stop this progressing?
What do I ask?
What are my next steps privately if this is going nowhere. I can understand the GP not being an expert in thyroids, but surely an NHS endo will be able to help?
Thank you!
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CherryPie2
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My gland is gone so I now have what’s called ORD but after treatment in multiple countries with countless healthcare professionals I found that out myself. When hashis was properly diagnosed by a gp whose baby was born without a Thyroid gland my cortisol was off charts & autoimmune marker was 2000. According to thyroid test I was fine. He looked at results then me & asked HOW HAVE YOU SURVIVED? I was mid breast cancer treatment at the time… his advice to me was don’t listen to endocrinologists.
vast majority of endocrinologists are diabetic specialists and useless for thyroid
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
It seems endos (NHS) rely completely on TSH. GPs don’t like to ask for endo referrals if the patient’s TSH is ‘in range’. Effectively it means that referrals don’t happen. I have a heart condition (whether the GP told the endo in the referral I don’t know) and endo refused to see me because my TSH was in range. “Just titrate up the levothyroxine” was his message. It’s kind of political this issue and nothing much about the patients needs. Shocking.
I have found an endo who at least seems to understand the connection and basics of heart and thyroid but so far I have not managed to get a referral. He does not do private work so I am stuck. I am waiting to see what my GP will do.
Think as clearly as you can why you want/need to see a private endo. It’s costly and can be disappointing.
However the best advice/knowledge is here on the Forum. But it’s a fairly steep learning curve.
Yes they are obsessed with those levels - My GP was well, you're just above range, nothing can be done. Good advice re endo - I just feel like I need to be doing something - I can research but it is very overwhelming. Would be lovely to go to someone trusted.
I am afraid we would all like that very much. If you find someone in that category, we would ALL love to know. I don’t really want to disappoint you. It’s just we have all been there, got the T-shirts etc etc. However you could be lucky and as I said, we would all love to know.
Take heart and keep learning. You clearly already know quite a bit and have been advocating for yourself. Well done!
I've been battling joint/limb pain/numbness for 5 years
So, they've found nothing to account for this, but no-one thought to test your nutrients: vit D, vit B12, folate, ferritin? They sound like low nutrient symptoms to me. So, what you need is these things tested.
I don't think there's much point in asking an endo for that, doubt they would know anything about nutrients. But, you could ask him to test your cortisol. That is probably low, too.
Now during these investigations, sub-clinical hyperthyroidism was found and I had to fight the GP for levothyroxine
Are you sure you don't mean sub-clinical hypothyroidism? They wouldn't give you levo for hyper. Levo is thyroid hormone replacement but if you're hyper you already have enough thyroid hormone of your own.
In any case, don't be taken in by this 'sub-clincial' bulls**t. That's just an excuse not to treat you - because let's be honest about this, they really, really do not want to diagnose and treat you. And will do an say anything to avoid it. But being 'sub-clinical' hypo would be like being 'sub-clinical' pregnant - either you are or you aren't!
Now my inkling is all my issues - pain, cold, dry skin etc is all thyroid related.
Directly or indirectly, yes, I expect it is. But, they'll never admit that.
TSH has danced around 4.97, 4.6, 3.98. 7.16, 3.06, 1.79, 2.93, 5.02 over last 2 years (latter this week's reading)
Typical Hashi's. As soon as I read that, I thought 'ah ha! Hashi's'.
That said, have you always have the blood draw at the same time of day? TSH varies throughout the day and is highest before 9 am. So, that's the best time to do it. If they're all done at different times, you can't compare them.
Can you give us the ranges, please? Ranges vary from lab to lab, so to interpret an FT4 reading we need the range that came with it.
I REALLY FOUGHT GP as had an inkling for TPO which turned out to be 266
Don't be impressed by the level of antibodies. All you need to know is if it's positive or negative. The actual level is of no importance.
NHS endo rejected my referral as said I couldn't possibly have thyroditis
I'm afraid you've been mislead and are barking up the wrong tree. Endos know next to nothing about thyroid - they are 99.9% diabetes specialists - and even less about Hashi's. He probably wouldn't recognise and antibody if it got up and bit him! I know the name - endocrinologist - suggests that they know all about all the hormones, but the stark truth is: they don't.
I'm thinking I have a hashimoto issue in which case is it best to try and stop this progressing?
You do have Hashi's - or Ord's. What's the difference? Hashi's has a goitre but Ord's doesn't. Apart from that they're the same: same antibodies, same treatment, same outcome.
But you cannot stop this progressing. There is absolutely nothing you can do. The disease will continue to take its course whatever you do. That is another stark fact that you have to come to terms with - and don't believe anyone that tells you any different.
surely an NHS endo will be able to help?
Highly unlikely, I'm afraid. And could even make things worse. They know nothing but have some very weird ideas. Be very careful and double check everything he says.
What do I ask?
I doubt if he'd have any answers whatever you ask. But, what you need is further testing: nutrients and cortisol. But do not listen to any dietary 'advice' he might feel inclined to give you. Doctors in general know nothing about nutrition, but - again - have some very weird ideas. You probably have low stomach acid (refuse PPI's) and high cholesterol (refuse statins), as these are hypo symptoms. And the low stomach acid will make digestion and absorption of nutrients difficult. But you need optimal levels for you body to be able to use the thyroid hormone you're giving it. So, those are you next steps. It would also be a good idea to ask to have your FT3 tested to complete the picture, but not sure you'll get it. The don't know what T3 is.
But, if you draw a blank on all scores with the endo, private testing is available, where you can get all this things tested without a doctors negative attitudes to stop you.
Yes, it's not just about being in range, it's where within the range the result falls that is important.
Your B12 is too low. It needs to be at least 550. Your folate needs to be at least over mid-range. Your ferritin is dire, and you need to see your GP about that and get a full iron panel done. Vit D should be over 70. So, all of those need attention. And it might be a good idea to write a new post asking just about those to get advice about supplementing.
you'd think with every human having a thyroid since the beginning of time they'd be specialists available!!
Well, I'm afraid it's all about money. Big Pharma are making a small fortune - several small fortunes and a cople of large ones - out of drugs to 'treat' our symptoms. If we were treated correctly and got well, they would lose a lot of money. They are powerful people and have the medical profession well under their control.
The long and the short of it is: they don't want us to get well. We are their biggest customers.
I think I'd have to get T3 tested privately - but then the question is what to do with it?
If it's low? If you're a poor converter? Fight to get T3 prescribed along with your levo. And if that fails, buy your own. But first of all you have to have it tested and find out how well you convert.
You clearly know your stuff. Thank you so much for helping - far more confident to keep on going with it. There's definitely more work I can do but at least I can see a bit more of a direction and that the nutrients are more out of whack than I thought.
How long have you been on 50mcg? If your TSH is fluctuating as much as that and with a reading of over 5 it suggests you are chronically undereplaced by Levo and need a dose increase.
Leaving you on 50mcg, which is the starter dose for most people is criminal. On Levo or other thyroid replacement most people feel their best with a TSH of 1 or under. You are going to need to politely but firmly insist they prescribe 75mcg of Levo and will probably need several more increases in the future.
Sadly as many of us have discovered most doctors seem to know sweet FA about how to effectively manage thyroid disorders. Apparently they spend an afternoon in Med school studying the endocrine system. As long as your TSH is somewhere, anywhere in the range that's good enough 🤦♀️apparently.
Certainly the case only now having read through this forum and NICE how woefully under treated I've been so far - nothing to do with all my symptoms just that I'm close (not even in range) to the TSH is good for everyone advising.
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