Endo Visit

[Alley27]

I am going to see an endo on Tuesday, the same one who last year sent me home with T3 toxicosis. Can anyone give me an idea of what to ask her at this appointment please.

I have a diagnosis of hshimotos disease which is still untreated. I am only going to this apt because my ENT went out of his way to arrange it. I just know she will not help me and am so fed up. This time if I get no help, I will self medicate.

I get very tired and thirsty and on the occasion I mentioned earlier, as well as T3 toxicosis, my TSH was completely depleted. I wonder if it would also be a good idea to ask her about the adrenals and the pituitary. I have also been on steroids for 2.5 years due to AIH/PBC overlap. (autoimmune liver disease) Steroids; long term use; can cause problems with the adrenals.

Thank you

Conniefused x

[Clutter]

Connie,

What do you mean by T3 toxicosis? If you have recent thyroid function test resultswith lab ref ranges it would be helpful. And just to clarify, you are not taking Levothyroxine (T4) or Liothyronine (T3)?

[Alley27]

Hi t3 toxicosis is too much T3......I am not on levo (T4 or T3) at all, I have hashimotos diagnosis and it was ENT who found that after he did needle test on nodules. I don't have my recent results because I have truly lost all hope in ever getting the treatment that I need, have asked and been refused, which I know is illegal (I am sorting this out) And refuse to communicate with the endo and gp on this matter because they DO NOT listen. Yes I have AIH/PBC as well, but the symptoms I am suffering most are unrelated to these, believe me I know.

I just would like some direction regarding what to ask the endo on Tuesday as I am at my wits end and I just want the treatment my body needs.

On another note, because of my liver condition and the amount of aluminium in levo and all of it's derives, I would never put Levo through my liver and will push for NDT.

Thanks

conniefusedxx

[Clutter in reply to Alley27]

Without your thyroid results it's hard to advise whether you need any thyroid replacement. Ask endo for a printout of your recent results or ask him/her to tell you what they are and the ref ranges. Contact Patient Advice Liaison Service (PALS) if endo won't give you your results and write to your GP Practice manager to make a subject access request under the Data Protection Act for your test results. Complain to the CCG and ico.org.uk/for_the_public/t... if they aren't provided.

Ask the endo why your FT3 was so high and have they tested for Graves (TRab)in addition to Hashimoto's. It may be that you were in a hyper phase of Hashi's to cause high FT3.

Check the aluminium levels of Liothyronine (T3) in case it is offered instead of Levothyroxine. Many endos are unfamiliar with NDT so describe it as dessicated pig thyroid, Armour or Erfa which they may have heard of, but you may be better with NatureThroid or Westhroid Pure which are hypallergenic. There are a list of all NDT ingredients in this link stopthethyroidmadness.com/a...

NDT isn't licensed for use in the UK but GPs and endos can prescribe it on a named patient basis (see templates on thyroiduk.org ) although many won't, because they either don't understand it, or aren't allowed to by their hospital or CCG. If this is the case you can buy NDT on the internet without a prescription.

[shaws Administrator]

Is there not another Endocrinologist you could consult?