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[Castlegreen74]

Hi All, I'm new to the forum and am hoping for some guidance around a situation that I have found myself in.
Long story short is I am a 50 year old woman who was diagnosed with Hashimotos (underactive thyroid) at the age of 35 (this does link in I promise  .
At the age of 38 I underwent a full hysterectomy leaving me with Cervix only, so no hormone producing ability. I was advised at the time that I would go straight into Menopause and there would be no need for HRT.
Fast forward to now at the age of 50 - due to lots of different symptoms I have started on Oestrogen only HRT, as of February this year after years of asking the question as to whether I should be on it due to pain and symptoms I have experienced.
Yesterday I had an appointment with an Endocrinologist to discuss issues with my thyroid (not a satisfactory meeting unfortunately as I was told basically this was my life and there was nothing they could do for me as they "don't know enough about hormones and they tend to treat people with the same resolutions, however I don't fit into that box because I jump regularly between ultra Hype or Ultra Hyper. Anyway I digress, he discussed my hysterectomy and asked me what HRT I was on. I advised I'd only started on it this year and to say he was shock was an understatement. However he quickly recovered himself to quash all of my concerns with non answers.  He did however state that it is a matter of medical procedure that if a women has a radical hysterectomy before the age of 40 then they are to be provided with HRT.
I am and have been concerned regarding this matter since the original operation and have never received or been able to find myself, information to advise what direction I should be taking in this matter.
I'm currently in a state of such emotional distress with regards to my prognosis of living like this for the rest of my life, with little and no support, no positive outcomes etc that I just wanted to reach out and see if anybody else has been or is in this position, the advice that they have been given, or if there is a medical professional who could help me in how I can help myself as, without sounding alarmist, I have been abandoned by the medical professionals around me since my original diagnosis and find myself now struggling to know my next move to give myself a better quality of life.
Thank you.

[bombsh3ll]

You poor thing. Did you have the radical hysterectomy due to cancer? I am trying to think of why you may not have been offered HRT, but unless there was a clear contraindication, leaving a 38 year old woman with no ovarian hormones is indefensible.

Additionally, hyperthyroidism, along with early surgical menopause, increases the risk of osteoporosis, so please insist on referral for a DEXA scan if this hasn't already been done.

It is bizarre that the endocrinologist didn't seem to know how to treat your thyroid condition - that's their job FFS.

I am not an expert in thyroid conditions however I do know that in very basic terms if someone has hyperthyroidism that is refractory to medication, the thyroid (either all or part of it) can be removed surgically or destroyed by radiation.

You would then be dependent on thyroid hormone replacement for life however this is generally considered preferable to uncontrolled and prolonged hyperthyroidism.

[Castlegreen74]

Hi and thank you so much for your reply.  The first conversation whereby I don't feel like I'm making this up !

The content of your reply is exactly my way of thinking and I did ask the question yesterday regarding my thyroid being damaged and being removed. He was like a politician - did not give any direct answers. When asked about my raised risk of heart disease/kidney/diabetes (due to my levels being high or low every 2 months) and osteoporosis- he declined to answer any of these questions.
Was I surprised ? No, this has been the way throughout this rubbish journey but I'm not ready to give up the fight yet.
The hysterectomy was due to Endometriosis and I had many conversations with my consultant at the time regarding HRT, he was a very (very) elderly gentleman and I was given short shrift. I am aware that Endo is hormone driven and therefore initially there may have been a risk of regrowth but considering I have no hormone producing woman power and I've been free of Endo all this time, I would have thought that even a couple of years after the hysterectomy I would be viable for HRT. But no no no each time I've queried it - not even something they would consider.
I'm now on oestrogen only HRT, where I believe I should have the full package including Testosterone.
I feel totally invalidated by the professionals that I've seen and yesterday, sadly,  I left the appointment realising and accepting how little my life meant to them and that's the emotion I'm currently trying to navigate through.

I honestly think that my only route is to go private, however due to my health issues I've finally had to admit that I'm not superwoman and cannot cope any longer - so I've had to take a step back which does not afford me the luxury of private healthcare.

[sheila99]

You can ask for a referral to an NHS menopause clinic if you need help beyond what a gp can prescribe (and it sounds as though you could find a better educated gp?). The wait can be over a year though. I don't know much about thyroid but it might be worth contacting Wrensong directly if she doesn't see this post as she seems to be knowledgeable on it.
  I'm a bit surprised you're not on progesterone in case the oestrogen results in endometrial growth elsewhere.

[Castlegreen74]

Thank you.
The sad thing, I never see the same GP in my practice. I'm sure many many people experience the same inconsistency.
I am appalled at the overall lack of knowledge or indeed possibility of not caring enough to become knowledgeable.

I've got my HRT review coming up so I'll see what I can do.  Do you not ever get tired of constantly chasing for help ?  Wouldn't it just be lovely it there was a holistic approach to medical care - communication between professionals of different skills and experiences.
Anyway I digress - I'll see if @Wrensong can help me in anyway - I'll try and find her.

Once again, thankyou so much. It means a lot to be heard.

[SundayGirl]

Castlegreen74 - If you really want help with your thyroid issues, you're going to have to take things into your own hands and be really proactive. I suggest joining the Thyroid board on Health unlocked where you will get more help and common sense talking from the other members there than you will from any Endocrinologist.

Additionally, hyperthyroidism, along with early surgical menopause, increases the risk of osteoporosis, so please insist on referral for a DEXA scan if this hasn't already been done.

Please stop scaremongering. Castlegreen74 has a diagnosis of Hashimoto's Thyroiditis, which is hypOthyroidism NOT hypERthyroidism.

It is bizarre that the endocrinologist didn't seem to know how to treat your thyroid condition - that's their job FFS.

Nothing bizarre about that. The majority of Endo's are diabetes specialists not thyroid specialists.

I am not an expert in thyroid conditions however I do know that in very basic terms if someone has hyperthyroidism that is refractory to medication, the thyroid (either all or part of it) can be removed surgically or destroyed by radiation.

You would then be dependent on thyroid hormone replacement for life however this is generally considered preferable to uncontrolled and prolonged hyperthyroidism.

There is nothing "basic" about living with thyroid disease.
Surgical removal or RAI treatment is not to be undertaken lightly and is not normally advised for hypO.

Being hypO, castlegreen74 is already dependent on thyroid hormone replacement FOR LIFE. No ifs. No buts.

[Kathleen]

Hello Castlegreen74 and welcome to the forum.

You say that you have a diagnosis Hashimotos Thyroiditis but that you regularly experience symptoms of Hyperthyroidism, have I understood that correctly?  I assume that you are taking medication to treat low thyroid such as Levothyroxine?  Your GP is supposed to be able to manage your condition by taking regular blood tests however if you are not doing well the Endocrinologist should have been able to help you.
I apologise if I have misunderstood and I agree that Wrensong has a wealth of knowledge on this subject so hopefully she will be along soon.

I agree that you shouldn't have been left without HRT for so long but it is a good sign that you have now been given Oestrogen. Perhaps the GP who prescribed this can be persuaded to add testosterone and progesterone if necessary. I realise that there is a long wait for NHS menopause clinics but it would be worth getting on the waiting list so that you see a specialist as soon as possible.

I am sorry that I can't be of more help and I wish you well.

Take care and sending hugs.

K.