Is it worth seeing a Private Endo? Wanted to ex... - Thyroid UK

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Is it worth seeing a Private Endo? Wanted to explore different treatment options.

franniebabes profile image
5 Replies

Hi all,

I'm looking for some advice please. I live in Wiltshire and have seen the NHS Endo at Salisbury twice. He's been supportive and corrected my Levothyroxine level as my GP's kept mis-managing it.

I discovered in February that I have Hashimoto's, which is obviously the cause of my Underachieve Thyroid. I wasn't happy to discover this as my thyroid problem was finally diagnosed in 2011 so this underlying cause is a somewhat late discovery. It is a step forward to at least know this I know though.

My antibodies are very high (I don't have the figure sorry) so I've read up online (!) and tried going gluten free and trying to go Paleo. I've had limited success with both due to sleep deprivation from my small children. I crave biscuits and bread!

I've lost a tiny amount of weight, but am now stuck at 16st 12. I'm not sure Levo agrees with me. I'm very active with my kids and going to the gym so I'm not a couch potato. Fat chance!! I am getting disturbed sleep due to my 9 month old baby still waking in the night (and my 5 year old too!), but sometimes he only wakes once and in spite of this my fatigue is crushing.

I can have good and bad days and on the bad days I have no energy whatsoever and everything is an effort. I'm also tearful and have moods swings.

In frustration, I've booked to see a private Endo at The Glen Spire Hospital in Bristol. After reading a lot of your posts I'm now worried that this is going to be both a waste of my time and money. The Salisbury Endo just told me to cut out carbs and exercise for at least an hour a day (the exercise advice is not that easy to follow with no childcare). I'd hoped seeing a different Endo privately I might be able to get advice on trying NDT/Armour, but I'm now unsure this will be the case.

I've also seen a Kinesiologist who's put me on Selenium, Vitamin C and D and probiotics, but that's all I take apart from Levo and hay fever meds.

I'd love to hear your recommendations and advice please. I really want to get my Hashi's under control and get my energy back so I can lose weight and be here for children.

Thank you x.

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franniebabes
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5 Replies
greygoose profile image
greygoose

Sometimes it's a good thing to be a couch potato! I should think you're already active enough with three kids to look after. And going to the gym is using up your T3. Obviously you don't have enough T3, which is why you still have symptoms, so going to the gym is counter-productive, and could make you put on even more weight!

Never, ever, take nutritional advice from any type of doctor. They just don't have a clue! Cutting out carbs is the last thing you should do because it will negatively impact your conversion. So, re-embrace the carbs, cut out the gym, and you should feel a bit better.

Even so, you might not be converting very well - which is more likely that levo not agreeing with you - so if you find a new doctor, the first thing to do is to ask him to test your FT4 and FT3 so that we can see how well you're doing with conversion. You might need to add some T3 to your levo. :)

shaws profile image
shawsAdministrator

Many people have been disappointed with their consultation that they initially had high hopes (and money) for. So I think I would wait a while before going down the private route and members here will respond and try to help you.

I agree with Greygoose.

This is a good link as well re Hashimotos in particular.

hypothyroidmom.com/when-the...

Members who have hashis have found that going gluten-free has helped reduce the antibodies and this is an explanation re antibodies:-

thyroiduk.org.uk/tuk/about_...

We have to read and learn and we can get better step-by-step. If it fails, then you can try Private. You have an Autoimmune Thyroid Disease called Hashimotos.

shaws profile image
shawsAdministrator

When you have a blood test for thyroid hormones it should be the very earliest possible and fast. Thyroid hormones should be taken on an empty stomach with one full glass of water and wait about an hour before eating. Also allow 24 hours between your last dose of levo and the test and take afterwards. This allows the TSH to be highest as that's what doctors take most notice of.

Ask GP to test Free T4 and Free T3 - labs may not do so if TSH is 'in range' but you can get a private one by a recommended lab and get a small discount if your mention Thyroiduk's Code No.

Ask GP also to test Vit B12, Vit D, iron, ferritin and folate and antibodies.

franniebabes profile image
franniebabes

Thanks for all your replies. I really appreciate you taking the time. Let me digest all you've said I'll come back to you more fully in a few days (I'm away for work tomorrow v early and will have patchy WIFI).

Thanks again x

TupennyRush profile image
TupennyRush

Hi there

I went to a private endo off the thyroid UK list; he was a marvel. Prescribed ndt, checked my vits and hormone levels and has been very supportive.

But as with all things it depends on the individual. Pick your private endo with care there are great ones out there but there are also a lot of arrogant know nothings that will do the ndt bad/levo great and won't expand their knowledge by reading up on thyroid issues.....

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