Private endocrinologist with immunologist knowledge or colleague! PM please. Thanks so much.

[Kitty1watson]

Hello lovely people. I have decided to try and see someone privately and am hoping someone may be able to give me their view on endos they have seen. I am happy to travel for this, as I live in Cornwall and have had a very poor experience so far. London, Bristol, Southampton, Exeter, Birmingham all very doable. I am on a 6 month waiting list to see a private specialist in women's health in Cornwall. There is no one else here, according to my GP.

I have AXA health insurance through work and my policy disregards medical history, so I am hopeful of getting some help.

I would like someone willing to consider T3 only or NDT and who may look more holistically at what is going on. I believe my immune system may play a part, as all my symptoms disappeared in pregnancy (when immunity is suppressed) and I lost weight, only for everything to return within 3 months of having the babies (and immediately gain back the two stone lost). If there is no such person, perhaps someone who works closely and collaboratively with an immunologist??

[Current and previous results are all that I have a suppressed TSH (I take 200mcg T4 and 30mcg T3); under range FT3 and under range FT4 and my endocrinologist says the ONLY explanation is that I do not take my medication properly and the only result that matters is TSH. My B12 is low despite taking oral tablets and the GP is ignoring my request to reinstate injections, as my levels are "normal" (but low). I take D3 away from my medication. ]

Please PM me with any thoughts on a good fit for me. I understand my suppressed TSH may be caused by taking T3, or by pituitary involvement or adrenal issues, but my endo does not agree. She did also tell me my DHEA is suppressed and needs supplementation and I think I posted about this here, as she told me to "buy it on Amazon or somewhere as I can't prescribe it" and I think one of you explained that this is illegal.

I really need a new endo who will have enough curiosity to help me get to the bottom of why I am still not well and will not send me away because my TSH is suppressed.

Thanks so much.

[SlowDragon Administrator]

I believe my immune system may play a part, as all my symptoms disappeared in pregnancy (when immunity is suppressed) and I lost weight, only for everything to return within 3 months of having the babies (and immediately gain back the two stone lost).

This is typical of autoimmune thyroid disease, it disappears when pregnant, but bounces back after giving birth….often significantly

Presumably you have had thyroid antibodies tested to confirm autoimmune thyroid disease also called Hashimoto’s

…..couldn’t see any mention in previous posts

Have you had coeliac blood test done, are you on strictly gluten free diet

Essential to regularly retest vitamin D, folate, ferritin and B12

When were these last tested

[Kitty1watson in reply to SlowDragon]

GF since 2007. Can't have a test as I don't eat it. My gp is unbelievably bad at testing vitamins so I'll get an updated one privately. I'm not sure about Hashis. I have had antibodies leading to a diagnosis of an autoimmune condition but not for Hashis, as far as I know. I will get that done too.

[SlowDragon Administrator in reply to Kitty1watson]

As you’re gluten intolerant and have other autoimmune diseases it’s pretty much guaranteed your hypothyroidism will be autoimmune

[CG12345]

I gave up on endos and started working with a functional clinic to get to the root cause of my hypothyroidism. However, it doesn’t seem - based on two tests - that mine is hashimotos. Though lots of the practitioners at my clinic specialise in that and other autoimmune conditions- London Clinic of Nutrition. They do everything remote and working with Helen I have my health in the best place it’s been since I was a kid.

[Kitty1watson in reply to CG12345]

Do they prescribe medication?

[CG12345 in reply to Kitty1watson]

I don’t know, I think because they more root cause focused it’s more about supplements and testing etc. It will depend as some of the team are doctors and some are nutritional therapists etc

[Kitty1watson]

Can anyone PM me experiences with Dr Abbi Lulsegged, London/Kent? Many thanks.

[HowNowWhatNow]

Hi I just tried to Pm you with a London area Axa compliant name - re: your question - but whenever I do that it sends my HU web page into spasms. If you message me first, I’ll try to respond to you.

[Kitty1watson in reply to HowNowWhatNow]

It did it to me, too, when I checked after your message. It was all strobing!! It seems to be working again now!

[HowNowWhatNow in reply to Kitty1watson]

strobing is a great describer for it. I’ll try now.

[Vickisophieunicorn]

Hi

I just came across this post and was wondering if you got anywhere with londondoctor or holistically? I have hypopituitarism (therefore hypothyroidism) and I am at a loss as to where to go. Dr Lulsegged was recommended to me also but like you I have AXA. Id really appreciate your help. I have no hormones producing naturally and I'm miserable!

I too believe mine is autoimmune response also.

Thanks

Xx

[Kitty1watson in reply to Vickisophieunicorn]

Hello, I plumped for another doctor recommended by someone here and I'll pm you, as I think we're not allowed to discuss anyone on the board.