Thyroid UK
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Should I push for endo referral?

Hi everyone,

Just a quick question. I’m about to receive some results of vit D, b12, ferritin and folate tests and I think bone density?

I am autoimmune hypothyroid and have PCOS but have a lot of b12 and vitamin defiencies. I was severely vit D deficient in past. My tsh is creeping up again very quickly but of course T3 not being tested.

So my Q- when I speak to the doctor about the results- should I push for endocrinologist referral? Or is it just not worth the fight? Will I be better just self managing if no further treatment is offered?

I know a lot of people will tell me to run for the hills (!) 😂 but is it still worth pursuing a referral at least? Will the endo do at least some more testing or be even vaguely useful?

I suppose it depends on how good the endo is but in general- were there any benefits?

Like maybe they will look at the different autoimmune conditions and sort of look for links?? (Too hopeful? )

If deemed completely useless then I’d rather pick my battles with my Gp and not push for referral at this stage. I’d rather keep him on board for other queries!

Any advice, for or against, appreciated ☺️ TIA

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Saya85

A lot of people have been extremely disappointed with their consultations with an endocrinologist. If you want to pursue it then email dionne.fulcher@thyroiduk.org for the list of thyroid friendly endos, see who you can get to and ask for feedback from members in a new post (replies will have to be by private message). You may get lucky.

In the meantime, make a new post asking if anyone knows any good endos in your area, make it plain in the thread title to attract those from your area.

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Thanks! Will do

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Saya85,

If your TSH is rising you need a dose increase. The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

Hypothyroidism is usually managed in primary care but if your GP isn't managing it properly then ask for referral to an endocrinologist. FT3 isn't usually tested in primary care and not all endocrinologists test FT3 unless TSH is suppressed. If you want FT3 testing you can order private thyroid tests via thyroiduk.org.uk/tuk/testin...

There is no cure or treatment for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

Endocrinologists do treat PCOS. There is a connection between hypothyroidism and PCOS but like Hashimoto's PCOS is rarely cured and must be managed.

google.co.uk/search?client=...

If you have vitamin and mineral deficiencies your GP can treat them, it doesn't require an endocrinologist.

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Thanks- yes I am being treated for thyroid with dose increased. My GP in that respect is quite helpful and both he and gynaecologist (IVF) are in tune in that respect. (Thankfully 🙏)

I was just wondering if a referral would allow someone to actually look into it more deeply and holistically. As new problems seem to be cropping up all the time. And it seems up to me to research it all and then work out what it could possibly be and ask them to test. So far they’ve been good about testing but it seems like the goodwill will run out soon enough

But hoping an endo might sort it out I think that’s wishful thinking.

Reply

Saya85,

I very much doubt you'll find a NHS endo to look into anything deeply or holistically, they simply don't have the time.

However, if you are planning conception then NICE does recommend referral of hypothyroid women to an endocrinologist. You should also be aiming for TSH in the low-normal range 0.4 - 2.5 as it can be difficult to concive with higher TSH and it also increases the risk of miscarriage. Levothyroxine is usually increased by 25-50mcg when pregnancy is confirmed.

cks.nice.org.uk/hypothyroid...

Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee

13. The serum TSH reference range in pregnancy is 0·4–2·5 mU/l in the first trimester and 0·4–3·0 mU/l in the second and third trimesters or should be based on the trimester-specific reference range for the population if available. These reference ranges should be achieved where possible with appropriate doses of L-T4 preconception and most importantly in the first trimester (1/++0). L-T4/L-T3 combination therapy is not recommended in pregnancy (1/+00).

onlinelibrary.wiley.com/doi...

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Thanks clutter,

Yes both Gp and gynaecologist are quite hot on the controlling thyroid levels for ivf/conception thankfully.

Would I need endo referral if they are managing my thyroid under the same guidelines?

But yes I can see how that would be useful

Thanks again

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Saya85,

NICE recommends referral. Up to you whether you accept or not but I thought you wanted a referral?

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Oh yes I do if it will help.

Sorry I meant could I justify an endo referral according to NIcE if my thyroid is being managed (I.e below TSH 2.5) by GP/gynaecologist.

Just in terms of justifying my request - that’s what I was alluding to.

But yes I will definitely ask for a referral ☺️

Reply

I'd ask.

You're not going to lose anything by asking and if GP agrees, you may meet good Endo. He may do some more tests, like full hormones panel, GP won't be able to do which is always helpful.

If the Endo is useless then all you wasted was a couple hours of your life.

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True! I guess you don’t get if you don’t ask!

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