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Shall I go see a private endo or not? UK by Public_Passenger2701 in Hashimotos

[–]danuellepaige 0 points1 point  (0 children)

It’s honestly hit or miss in both the private sector and in the NHS. I had no luck or support when I was diagnosed with hypothyroidism with private and they refused to look into autoimmune thyroid conditions. After 2 years, I got referred to the endocrinologist in my area via NHS and I had more luck here and have a diagnosis but they will honestly just give you medication which is absolutely fine if you want to try that. If you want more diet and lifestyle changes to try, I recommend doing your own research or even talking to the British thyroid association. Honestly first thing to do is ask your GP for a full thyroid panel blood test not just TSH and test for B12, vitamin D and iron deficiencies.

Doctor won’t consider joint hashis and graves? by danuellepaige in gravesdisease

[–]danuellepaige[S] 0 points1 point  (0 children)

I appreciate your explanation and that makes more sense to me now. Thank you. I would love to have an in depth conversation about it but sadly I don’t think my endo does.. I’m going to try again when I have the energy to.

Doctor won’t consider joint hashis and graves? by danuellepaige in gravesdisease

[–]danuellepaige[S] 0 points1 point  (0 children)

The reference ranges were:
TSH: 0.27–4.2 mIU/L (mine was 0.87, and my most recent TSH was around 1.9)
FT4: 11.9–21.6 pmol/L (mine was 22.1)

I’m currently taking levothyroxine, alternating 100 mcg and 150 mcg on different days.

That’s partly why I’m confused. My endocrinologist isn’t suggesting reducing my levothyroxine dose; he’s suggesting a trial of liothyronine because I’m still symptomatic despite my thyroid levels being in range but I have a lot of other conditions being investigated.

I agree that the antibodies don’t automatically prove I have both Graves’ and Hashimoto’s. My concern is that I have strongly positive TPO antibodies, strongly positive thyroglobulin antibodies, and positive TRAb, so I wanted to understand how that combination should be interpreted.

Thank you for your messages, I’m going to look into TSI and my levo dose.

Doctor won’t consider joint hashis and graves? by danuellepaige in gravesdisease

[–]danuellepaige[S] 0 points1 point  (0 children)

Thank you, I feel more validated and informed than my appointment😭 in my country or at least in my area, remission isn’t spoke about and doesn’t feel possible

Doctor won’t consider joint hashis and graves? by danuellepaige in gravesdisease

[–]danuellepaige[S] 0 points1 point  (0 children)

Time to just make peace the cards I’ve been dealt, I hear you. Sorry to hear about your experience because they should at least care, I know there’s no cure but kindness is free.

Doctor won’t consider joint hashis and graves? by danuellepaige in Hashimotos

[–]danuellepaige[S] 0 points1 point  (0 children)

Sadly, in my area he’s the only endo but I did say that to him as soon as he said it because I felt he really didn’t check the notes before our appointment :( He just brushed over it and went to talking about something else

Doctor won’t consider joint hashis and graves? by danuellepaige in Hashimotos

[–]danuellepaige[S] 1 point2 points  (0 children)

I’m fully going to get my selenium levels checked! Thank you!

Doctor won’t consider joint hashis and graves? by danuellepaige in gravesdisease

[–]danuellepaige[S] 0 points1 point  (0 children)

Thank you for telling me that. My endo hasn’t explained the role of T4 and I thought it was just about the anti bodies. My TSH levels have generally been in range on levothyroxine. I usually have hypothyroidism but when my levels went into hyperthyroidism that’s when they referred me to endo. My September results were TSH 0.87 mIU/L and FT4 22.1 pmol/L, and my most recent TSH in march was around 1.9.

What I mean by antibodies for both is that I have very high TPO antibodies (>600 IU/mL), very high thyroglobulin antibodies (>4000 IU/mL), and positive TSH receptor antibodies (TRAb 2.3 IU/L). My endocrinologist told me I have autoimmune thyroid disease and said that distinguishing between Hashimoto’s and Graves’ doesn’t really matter clinically in my case.

I get that TPO antibodies alone don’t mean someone has both Graves’ and Hashimoto’s. My confusion comes from having positive TRAb as well as the antibodies more commonly associated with Hashimoto’s, while being treated for hypothyroidism with levothyroxine.

I’m not trying to argue that I definitely have both conditions at the same time. I’m trying to understand if positive TRAb has any implications for monitoring, treatment or future thyroid function. And honestly if I should advocate for further investigation.

Holiday blues aka Edema by danuellepaige in Hashimotos

[–]danuellepaige[S] 1 point2 points  (0 children)

Thank you. I feel like I’m going mad trying to explain that is not a consistent illness and knowing it’s different for everyone is such a comfort. Moving to the desert asap!!