Does anyone have Central Hypothyroidism? - Thyroid UK

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Does anyone have Central Hypothyroidism?

Hello. Could anyone who has Central Hypothyroidism please contact me and let me know how it was diagnosed. I am trying to sort out my thyroid problems and would appreciate your help. Thank you.

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Hya Ballito, currently looking in to that myself so interested in any replies I hope you get.

Sorry I'm no help to you yet but it helps to know you and I are not alone.

I'm on my 4th Endocrinologist and just had tests regarding adrenal function as help on here pointed toward possible central hypothyroidism (possibly involving Pituitary function) from looking at my previous throid blood results.

I won't get my adrenal function / pituitary results til 12th September so I have to be patient!! Maybe I will find out which way to go forward. I certainly hope so as not functioning at the mo. Frustrating isn't it!

Love SallyB

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Thank you for your reply Sallybones. Seems like it is going to be a long research! I am seeing the dr. on Friday, but am not expecting any help there. I would think that adrenal function/pituitary tests would be the start for me. Thanks for your help and good luck!

Love Ballito.

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It might be worth contacting the pituaritary foundation to see if they can point you in the right direction re a pituaritary specialist. Most endos know little about central and are relucatant to diagnose you might do better with a pituaritary specialist.

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Thank you mandyjane for your wise words which are much appreciated.

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hi I know this was a while ago but did you get anywhere ..I'm in the same boat having being fobbed off by useless nhs so I'm going private soon..can't see me having any luck there but she does specialise in thyroid...

I want a pitituary gland scan did you get anywhere? thank you

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Hello Peroxideblader. My doctor (when I told her that I was going to self medicate, and needed to read up on the pituitary gland) said that she would give me a blood test for it, and the adrenals. She did and said that it was normal. I obtained some NDT Thyroid-S and have been self treating - much to my doctor's dismay. Last week I had to see a Kidney Specialist and I told him that I was taking the NDT and when he looked at my latest blood and thyroid reports he said that I was doing a good job and my figures were just like his as he also had an underactive thyroid. I am being called into the surgery to see my doctor again about my figures (she will not understand them) and I will tell her what this Kidney Specialist said. Its taken me a while to get to the right dose, but am quite happy now and I do feel fine. I never did have a pituitary scan but a few days ago I had a CT scan from my throat to my hips for something else, so will ask the Kidney specialist if everything looked o.k. there. I do hope you find help soon. It is so difficult when you are battling to feel well and the powers that be just seem to knock you back. Good luck and wishing you all the very best. x

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thank you for the reply it's so good to hear you're feeling better. I think self medicating t3 is my only option too. can I ask what dose you started at and found worked and how long til you felt better thank you

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Hi. I started on half a tablet and increased half a tablet every two weeks until I was taking two tablets. Unfortunately, although I didn't have any hyper symptoms, my bloods said I had taken too much. I then left the tabs off for a few days, and started on 1 tablet. I have private bloods taken every couple of months to see the results. One tablet was too much as my free T3 was too high. I now take three quarters of a tablet and I do feel well. It did take months for me to feel any different and I am afraid I was trying to push things on too quickly. It has to be slowly and patiently! I had my first private blood test in May last year, so I must have started taking the tabs probably six weeks previously. Hope this helps you. I am so very glad that HU gave me the courage to self medicate as unfortunately my doctor didn't know much about the thyroid and admitted it. All the very best. x

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thank you so much I'll remember to be patient if I get nowhere with this private endocrinologist..I can see it being £300 wasted but I'll try.

I just want to feel alive again after7 years of being so ill all the time.thank you again x

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Hi. I do hope you find that this endocrinologist is sympathetic and is prepared to work with you. Please let me know how you get on. Sending positive thoughts to you and best wishes. x

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Yes. I was diagnosed with central hypothyroidism in August of 2018. Since then I have been struggling with sweating. I also had a pituitary tumor removed which caused adrenal insufficiency and diabetes insipidus. Mayo Clinic Rochester is handling my case. Big thing in diagnosis is to get t4 and t3 tested. Not just the normal numbers. Check your cortisol level immediately. This also may be a indication of adrenal insufficiency.

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Thanks for your information. Hope @Peroxideblader sees this as well. I only had a cortisol and adrenal blood test and my dr said it was o.k. but I have had several private blood tests for the thyroid. Sorry to hear that you have had so many problems but hopefully Mayo Clinic will get to the bottom of what you need to be well again. Best wishes. x

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