A bit worried..

[lau99]

Hi everyone, I hope you're all doing well.

First, I guess I'll give a mini update - this month marks my fourth(?) month on NDT, and following a blood test I took in mid-July, I've been given a dose increase. I've been feeling pretty good on the NDT; no side-effects, no feeling over-medicated at all, and for the first time since TT (that I know of), my antibodies are in proper remission I still have some lingering hypo symptoms (like the bloating all over and bathroom issues), but they seem to be (hopefully!) improving slowly.

I did notice a new(?) symptom recently that has disturbed me a little bit, though. I'm not sure that there's a way for me to phrase it that isn't completely embarrassing, but I've noticed some...lactation of clear fluid upon squeezing? I have reason to believe it's been happening for a few months now (longer than I've been on the NDT at least, so probably not related), but I first saw it for myself yesterday. Come to think of it, my nipples have been a bit more tender and painful recently as well, but I didn't think much of it as that isn't super unusual for me, even well before I ever had Graves' disease.

I've read some conflicting things over whether it's something to be concerned about or not, so I just thought I'd ask here if anyone else has had this before...I'm dreading having to make an appointment about it because of the awful experiences I've had on the NHS, and because my GP practice makes you tell the receptionist over the phone why you're making an appointment/what symptoms you're having so that they can decide whether it warrants an appointment or not. Moreover, the GPs at that surgery all recognise my name, and one of them told me once that they see my name pop up too much on their system... Anyways, I digress.

Any input would be greatly appreciated

[SlowDragon Administrator]

Is your endocrinologist private or NHS

Either way …..let endocrinologist know

High prolactin is common with thyroid disease

frontiersin.org/articles/10...

PRL and Autoimmune Thyroid Disease

Autoimmune thyroid diseases comprise mainly two disorders, Grave’s disease and Hashimoto thyroiditis (113). Hyperprolactinemia was found in 20% of patients with autoimmune thyroid disease and had double the frequency among hypothyroidism patients. Around 90% of Hashimoto’s thyroiditis patients presented significantly higher PRL levels in association with decreased cortisol titers (114). The role of dopamine agonists in the treatment of autoimmune thyroid disease is yet to be determined.

my.clevelandclinic.org/heal...

[lau99 in reply to SlowDragon]

Thank you, SlowDragon. I'm surprised that it's so common yet I'd never heard of it being listed as a symptom before. My current endo is private and I will make sure to let him know asap. I just don't want this to be a sign of something more sinister.

[pennyannie]

Hey there Lau

Glad to read you feeling as though you are getting back on track :

It does take time and hopefully the stomach issues will ease - I still need to take vitamin C to bowel tolerance and supplement all my vitamins and minerals but it's a small price to pay to start to feel like myself again.

I've no idea about your question though a quick search bought me to the dreaded TSH again and the pituitary gland - there seems there is a connection when with an AI thyroid disease either Graves or Hashimoto's and with the solution when hypo to be optimally medicated on thyroid hormone replacement.

Take good care :

[lau99 in reply to pennyannie]

Hi Penny Thank you so much, I just hope it continues so I can be a bit happier in myself...the vitamin C is a good idea - I'll definitely look into trying that. Thank you for looking that up on my behalf as well - I'd never heard of that as a symptom and have been fretting over it since I noticed yesterday...will most likely still notify my doctor just in case.

[pennyannie in reply to lau99]

Well you can learn something new every day on here, following up behind SDragon & Co:

Your endo will probably be prepared for the question - so please don't worry.

You know you are now going in the right direction.

For well over a year you have been trying to get help through the NHS maybe this is just a throw back to those times when your TSH was all over the shop as well - and just cause and effect.

I'm guessing, and you have this niggling you, so before it becomes an elephant ask the endocrinologist managing your treatment.

[Buddy195 Administrator]

Hi Lau99, I’m glad the NDT is working well for you. Just wanted to add that if you don’t feel supported by your GP practice, I would look to change to another. I hope you get some answers re prolactin levels; do let us know how you get on 🦋

[lau99 in reply to Buddy195]

Thank you, Buddy I do have a couple of 'main' GPs who have been such a strong source of support for me in my thyroid journey, but I think you're right that I should start looking elsewhere, particularly as my master's degree is coming to an end and I'll no longer be registered with the campus practice. I'll definitely try to gather some courage to address this new symptom and come back with updates.

[Batty1]

Go see a gynecologist for breast issues and if they find nothing then go see Endo.

[lau99 in reply to Batty1]

That is a good suggestion, but sadly trying to see a gynae would require me going to a GP first and being put on a several-months-long waiting list if they think it's reason for concern, and if they don't, it'd just be entered onto my file as a symptom that an endo might never even see unless I specifically brought it up, I imagine...I'm considering maybe going to a walk-in clinic about it, but I'd hate to be told that I'm wasting time/resources by asking about something that isn't worthy of any concern

[Batty1 in reply to lau99]

Your not wasting time or resources because what you have going on isn’t normal and needs to be addressed sooner then later…. Can’t your GP put you in for and emergency referral to Gyno?

[jamesal0]

Hi Lua99 Be happy. A little leak here or there - not a problem. The main thing is you are feeling normal. So many peoples of this forum feel horrible. I personally love NDT, yes it isnt perfect but it's so much better than the alternatives. I just speed read an article one of our lovely Admins put up and I found one paragraph that rings so true "Thyroid medications have a narrow therapeutic index, meaning that they are “goldilocks” hormones, and careful dose titration is needed to get things “just right.” Doses that are incorrect by just a tiny amount can result in symptoms from over-treatment or under-treatment. " In other words what you need to do is fine tune . You might be taking 120mg per day when really you need 110mg or 135mg. On NDT you need to optimize your dose - slowly increasing or decreasing , watching for side effects - how do I feel today, what temp am I, how dry are my eyes, is my hair falling out, nails brittle, loosing weight, gaining weight, crawly skin, energy levels, leaky nipples etc.

good luck

J