Thyroid symptoms but doctor won’t prescribe because of tsh being “normal”

[Emmafrank41]

Hi

I saw the endo the other day. She said my thyroid antibodies are high, have a nodule, cholesterol is high, Pernicious Anemia, mood swings, hair loss, gut issues. All she said is pointing to Hashimotos but she will not prescribe anything because my tsh is “normal” she has to wait til it becomes out of range 😳 said it could take years. I’m suffering. What can I do in the meantime to support my thyroid and help myself?

Many thanks

Emma xxx

[Mary-intussuception]

I would start by obtaining copies of all your medical records. Then you can see for yourself what your blood tests results are.

Anyone in the UK can request copies of their medical records free of charge now since change of rules in May 2018.

Ask GP for a referal to a different Endocrinologist.

[Hennerton]

She is obviously the sadistic type. If you have high antibodies you should be started on treatment. Can you try a different doctor?

[magsyh]

I had the same problem. I found a good private doc and i buy my own thyroxine. Private prescription is rather expensive but my private gp over sees my dose changes. I get my blood tests on nhs and 6 monthly private. It was my only option rather than stay sick thanks to nhs

[Emmafrank41]

Yea. It’s horrendous really. And this was a private appointment with an endocrinologist that was 200e here in Ireland. I was with her for 20mins. I took out my file and went through everything with her. She was saying in the end oh no I can’t prescribe because your not there yet to Hashimotos but you are on your way and it could be ten years before you get there and if I prescribe now you could go over in to over active. I left her office so deflated and hopeless again

[Mary-intussuception in reply to Emmafrank41]

"Not there yet to Hashimoto's . . "

I would be demanding a refund.

Are you sure this person is a qualified Medical Professional? Doesn't sound like it. I would investigate and complain to the appropriate authority.

Could you give all your blood test results on here, then people can make informed comment.

What ' Thyroid Antibodies ' were tested? If you have raised TPO (Thyroid Peroxidase Antibodies ) then you have Hashimoto's Autoimmune Thyroiditis and this is what causes Hypothyroidism (in most cases).

Anyone in the UK can apply in writing via letter or email for copies of ALL their medical records - free of charge (since 25 May 3018) from your NHS hospital, GP and any Private hospital or Consultant.

My next step would be to get copies of all blood tests results, scan report and all records.

Was any Thyroiditis shown on your scan?

Also, ask your GP to refer you to Gastroenterology with your gut issues or ask him/her to test for Coeliac Disease.

[QandA]

That's rotten. Try another endo if you can. Also, if you can afford to, maybe get some private blood tests done more often, following the advice given here, which is to get the test done as early in the morning as possible before food. My TSH went from just in range to out of range in a couple of months, so it may not take years.

[Mary-intussuception]

3rd reply

Just had a quick look back to your posts from a month ago , noticed you haven't replied on them so wondering if you're getting the notifications?

You have a lot more going on than positive Thyroid Antibodies.

What's GP said about the positive Gastric Antibodies?

What's happening about the low Vitamin D result ? ( Full range is needed to be certain of result).

Also:

Did you contact that helpline I gave you for the Irish Heart Foundation?

There are lots of replies to your previous posts but you don't appear to have come back to them ??

[Emmafrank41 in reply to Mary-intussuception]

I’m sorry mary. I didn’t even see the notifications until now. The doctor is trying to get me seen in the hospital Privately but it looks like they are refusing because I have outpatient appointments. I will keep you posted. I feel like I am dying every day. Thank you for your concern

[Mary-intussuception in reply to Emmafrank41]

It's just that you've had lots of replies and advice, but there hasn't been any response to them.

You seem to have some unusual blood tests results - I would list these and ask questions at your outpatient appointments. Ask for full diagnosis and prognosis. Ask 'how bad is it' . Ask about therapies and treatments. Ask which is the best way forward.

The last Thyroid Function blood tests results you posted were reasonable but don't know how old they are ? It depends on what time of day tests were taken and also - they can fluctuate with Hashimoto's.

You seem to have a number of Autoimmune conditions so is there an Immunologist at your hospital you can see?

I would have thought that Coeliac Disease needs to be confirmed or eliminated but you would need to eat lots of gluten prior to the blood test.

You could try posting on Pernicious Anemia Society forum also on the British Heart Foundation forum.

And / Or Phone the Ireland Heart Foundation helpline or email with details of your conditions diagnosed so far, all your blood tests results in (particularly the abnormal ones) and ask for their advice & support. Their main office is near you in Cork if you're able to visit.

[anonymous45]

We need to see blood tests to be most helpful! Many well respected endocrinologists point to studies that show the benefit of beginning treatment during the "subclinical hypothyroidism" stage of autoimmune thyroid disease / Hashimotos.

Whilst often referred as subclinical, in a decent portion of patients, symptoms begin to present before TSH raised well above the range. Preemptive treatment with thyroxine can reduce TSH, minimise symptoms, and help prevent thyroid nodules and even reduce the risk of developing thyroid cancer (very small anyway).

[Mary-intussuception in reply to anonymous45]

Hi anonymous45

This is interesting as I didn't have a Thyroid nodule when Levothyroxine treatment stated but (7 years on) I do now.

[Emmafrank41]

Thank you so much everybody for your input. I’ve been really unwell and that’s also why I couldn’t reply. Just crawling through the day with two small children and trying my very best to be there for them and not on my phone. I’m in hospital now. Hopefully I will get some answers this time instead of being fobbed off again

Emma 🌹

[anonymous45 in reply to Emmafrank41]

Best of luck getting treatment Emma, I hope you get well soon.

[Mary-intussuception in reply to Emmafrank41]

All the best Emma. Hope you get some answers and direction. The Consultants need to get together and fully diagnose you, try to find the best way forward - treatments, and consider any further blood tests or scans needed .

Hope they've made you comfortable.

By the way - I didn't get notification of your reply . Just checked thread and found it!

God Bless

xx

Mary

Here's the Irish Heart Foundation helpline number again in case you want to call them for some support or explanation of terminology or tests

1800 25 25 50