Seeing endocrinologist privately? ( thyroid)

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I have had thyroid disease (hashimoto's) for about 7 years now. I get levothyroxine from my gp and have blood tests every now and then. DP and I are thinking about trying for a baby and I know from previous conversations with endo consultants that ideally my TSH should be less than two. This is also when I feel most human. My GP doesn't agree though and thinks that 3.4 is fine. She will lot increase my thyroxin or refer me. Im tired, I'm struggling to concentrate and my hair is gallon out by handfuls. Incidentally, I also have low ferritine levels.
I'm considering seeing an endocrinologist privately and have been wondering if anyone has any experience with this?
What cost am I looking at?
Will be GP follow their recommendations if she hasn't referred me?

Can you recommend anyone in the south east?
Thanks for reading!

i have no thyroid function (they killed it with radioactive iodine) when i was pregnant with both my DS's i was put into a clinic especially for endocrice problems while pregnant. they took over and didnt have to see my gp

Do it. I had problems and my then GP refused to refer my so I went privately and was diagnosed with a pituitary condition.The endocrinologist then transfered me to his nhs list,so the cost was just 1 private appointment, it will depend on who you see but it was about £150. And yes,the GP follows the endo consultants directions with prescriptions etc. Well mine did.
hope that's helpful.

I saw one privately too, then got transferred to her NHS list. PM me if you are in London area as I thought she was brilliant. Once you have seen a consultant they will tell your GP what to prescribe. Cost was about £200 per visit...but if you are going private mention that you are self funding as I think a lot of them have unofficial different rates for insurance companies and self funders!

I saw one privately too when I found out I was PG as NHS are pretty slow at getting you to see one and TSH/T4 levels are v important in first trimester. Think it's worth it for peace of mind, especially as your GP thinks TSH of 3.4 is ok for TTC!

I'm seeing an endo at the moment, funded by my employers private medical insurance scheme. I've got hashimotos too. Each appt is £140 for a quick review, £200 for a longer appt and then blood tests can cost lots more on top. The consultant did mention that he reduces his fees by 25% if you are self-funding.

Can recommend my consultant if you are near Hertfordshire - I go to the Rivers Hospital in Sawbridgeworth.

Wow, thanks for speedy responses.
I can pay £200 for consultation, in concerned about the cost of blood tests, etc. would they consider looking at my nhs test results?
In previous pregnancy I was under nhs consultant but I managed to get pregnant ok because my ths was low.

Madness, I'm in Luton so yes please!

I know this is a long shot, but I was reading your post about private endocrinology, I'm looking for a good private doctor in London, do you still have the details ? Many many thanks claire

Both ThyroidUK and Thyroid Patient Advocacy (find them both on the web) have lists of doctors who are perhaps more open-minded than bog standard NHS. Incidentally, the NICE guidelines are quite clear about where TSH should be in pregnancy, so anyone with the OP’s issue could just print them and wave them at their doctor.

cks.nice.org.uk/hypothyroidism#!scenario:3

Personally - I had a friend in this position - if GP called local endocrinologist they would say get it down. And then keep testing during first trimester adjusting accordingly.

It's in the nice guidelines. Also to raise by 30-50% when first confirmation of pregnancy.

There's even a bbc radio 4 programme on it (health matters).

So really you shouldn't have to get a private one.

Hi there my friend isn't pregnant but isn't being managed properly by her endocrinology dept, she is just so poorly with it all and practicably bald having all the signs of being over active but bloods are under the go just keeps putting her levels up, her mum has offered to pay private, as all she manages is to go to work everyday then collapses back to bed, hence the ask ? But thank you fir the links xxx

I just buy Thyroid-S privately and go by how I feel (a gazillion times better) rather than bloods. My GP did agree to check my bloods once s year but won't give me the pills on prescription.

I felt awful on thyroxine.

Where do you buy it, primallass?

You can get Thyroid-s from the big online shop beginning with A

Sometimes it disappears off there, but it is a very good price at the moment. The pills don't crunch down the same as the previous bottles I've had, but I feel ok so far so will know soon if they are dodgy!

Hi
My GP said should aim for TSH between 1.0 and 2.0 . I have increased my Levothyroxine To 125mcg/ day to achieve this but don't feel much different :((
What is thyroid S? I've not heard of that before?

L4K your endocrinologist sounds like a godsend! Would you mind giving me their details? I am at the end of my tether with thyroid and adrenal problems, and getting no help from my NHS GP! Thanks.

L4K - I would so love your endocrinologist's details too. I am also at the end of my tether. I've had all the awful symptoms of Hashimoto's for years and my hair is now dangerously thin and still falling out. I'm so scared I'm losing it all. Really hopeful now that I've found this web discussion. Hope to hear from you. Thanks

Good afternoon,
I desperately look for an endocrinologist who can study my case ( hypothyroidism for 25 years and no improvement from symptoms and now with Teva LEVOTHYROXIN horrible side effects, unbearable headaches 24 hours with excruciating pain in neck and left shoulder, itchy rash, cramps in calves at night, dry mouth, like sore throat pain )
And prescribe Natural Thyroid Hormones as WP Thyroid ( hope to do better with those).
Can you please the name and telephone number of your endo. as I live in London.
Many thanks,
Kind regards,
Anna.

Any chance you could give me name of the endocrinologist please
Annie

healthunlocked.com/thyroiduk can provide a list of sympathic endocrinologists who will give better advise to get your thyroid levels optimal! That's where i was put it touch with my endo and i finally sorted my medication.

I wanted to give you a little bit of hope. I had a total thyroidectomy for cancer about 5 years ago and just had surgery for primary hyper parathyroidism. I have a 10 month old son. I got pregnant with a tsh level of 30+ and was 42.
So my point...yes the lower the better but it is possible to get pregnant with a tsh higher than that. The only thing that can lower your tsh will be the thyroxine level you take and if that is managed well it is unlikely that that will be increased if you are already in range. So I would suggest seeing an endo but it is still possible. X

hi - can you tell me who the endocrine specialist was you would recommend in London? thanks!

Hi there

I hope you are well. Just wondering whether you are still under the same endocrinologist and whether you could kindly provide details, as I’m at a loss with Hashimoto going from one therapist to another to no avail. Many thanks in advance, Rose.

I'm just researching thyroid for my elderly Mum - she has all the symptoms. Had thyroid radio-destroyed some years ago and been on Levyroxine ever since. Got the terrible "stiff neck" as mentioned about and awful balance issues. It is massively affecting her. I'd like to get specialist help for her.

Her GP "checks the blood tests regularly" but I don't know the detail of the results or even whether the GP (great GP BTW) is asking the right questions! May be testing the wrong things.

Sounds like she needs to be off the Levyroxine too? I will look for this Thyroid-S stuff.

Please PM me with any hints / tips / advice - we are desperate. What are the NHS or private substitutes for Levyroxine, given she has no thyroid function without something? Thanks.

My GP halved my Levothyroxine in Dec as my blood tests showed my levels were high since last week Ive had nausea, dizziness and muscle ache all day every day. I asked him at the beg of this week why Im suddenly feeling so ill and he said he didnt know but to bring my diabetic and thyroid review forward. The quickest appt for bloods was end of next week but I feel exhausted with not eating and being dizzy. Would I be within my rights to go back to him and ask to be referred to an Endocrinologist as my GP changes my Levothyroxin both up and down every review?