Just been diagnosed hypothyroidism

[jazzyoldjim]

I was diagnosed underactive thyroid on Monday. I suspected it was coming after my TPO antibodies were found raised in 2019 (level was 88) and then by 2020 it was 155. My gp wouldn't do anything at that point because my t3,t4 and TSH were all within range.

In my latest bloods my TSH was 6.26mIU/L (range 0.27-4.2) so my GP has diagnosed me with hypothyroidism and given me a prescription for levothyroxine 50mg to start and then 100mg after two weeks. Repeat bloods in 6 weeks.

I have two questions, this indicates hashimotos does it not? Should I have been referred to endocrinologist? Also, how long until I start to feel better?

Haha I have been waiting for almost 2 years to see endocrinologist. I am now on 200mg daily of Levothyroxine. It does not work for me since my menopause hit.

@caringcarer I understand the wait is prob long, but I haven't been referred as far as I know. Is it standard to refer?

I wasn’t referred, just given 50mcg with a blood test a few weeks later.

Same as @KangarooKenny no referral and put on 50mg in 2017 and still on same dose, all blood tests since have never changed my dose weirdly.
There has never been a mention of a referral

Yes, raised TPO and/or TG antibodies indicate what's known as Hashimoto's disease (although strictly Hashi's results in a goitre, you would have Ord's without a goitre - but the word 'Hashimoto's' is used for anyone with autoimmune thyroiditis it seems). I have it too, OP. I was diagnosed 6 years ago. At least you've been started on 50 mcg Levo and will have that increased, so with any luck Levothyroxine will agree with you and you will begin to feel much better after a few weeks. You wouldn't normally be referred to an endo unless there are other indications. Doctors have no idea what to do with autoimmunity so they won't send you to an Endo for that reason.

Sadly not all of us do well on Levothyroxine and may need some T3 added in. This can be problematic as getting hold of T3 is difficult (you would need an Endo to get this) or in some cases impossible. If you are hypothyroid it's likely you will have raised cholesterol (but this should normalise when your thyroid hormone levels improve) and may become insulin resistant. There are many, many health issues associated with hypothyrodism and some can be hard to shift (for example, thinning hair, excess weight). Very often people who are hypo have coexisting vitamin and mineral deficiencies, so it's good to get checked for those, in particular, Vitamin D, ferritin, folate and B12.

Autoimmunity is a separate issue. Your body is producing antibodies to 'self' and this has been triggered by something. It could be gluten (many people with hypothyroidism go gluten-free and some find a benefit from doing so) as gluten can cause 'leaky gut' or it could be something more difficult to eliminate such as tiny plastic particles that bind to your thyroid cells. The autoantibodies are cleaning up the damaged thyroid cells. What you want is no more damage to occur. This can be very difficult/impossible to figure out and so mostly it gets ignored by the medical profession.

It’s funny you should mention the goitre as when I was about 19 two people commented on the lump in my neck, but I didn’t do anything about it as it didn’t bother me. At some point it disappeared and about 20 years later I was diagnosed as hypo.

Most GPs wont refer to an endocrinologist unless there is something out of the ordinary. Hashi's is so common and endocrinoloigsts don't really care about the autoimmune aspects of it - they just focus on the thyroid function.

Some people respond really well to the meds and are restabilized and carry on. Others have minor ongoing symptoms despite medication and others continue to have significant issues from the autoimmune aspects even when euthyroid.
Meds are just replacing what your body should be producing, they aren't treating anything other than adding thyroid hormone to your body.

You should start to feel better with the thyroxine prescription, but may take a while as 50mg isn’t a a much

8 weeks to 10 weeks you should be feeling better

id be on the floor with a TSH at your level now, I think mine has been around 5/6 and I struggle to function at all and was down to one meal a day as no appetite [I don’t have a thyroid,] the gp upped my dose to 175 for a few weeks then back to 150

thyroxine replacement works fine for me and i generally just take 150 half an hour before eating every morning

I wondered if you were also on HRT? I've been under active for a long time with a fairly stable dose, but the perimenopausal symptoms I experienced were very similar to the hypothyroid ones, and did improve with HRT gel.

I think NICE guidelines only indicate referral to Endocrinology if treatment with thyroxine doesn't make a difference after X amount of time.

I've only ever been under GP care since diagnosed about 6 years ago. Annual blood tests for monitoring, and more frequent if I've had a change in dosage.

I may not be typical but to reassure the op. I started with an overactive thyroid and had a sub-total thyroidectomy (removal of 7/8). 50mcg was not quite enough so it was upped to 100mcg. I had, at the time, a very reassuring endocrinologist who told me that once on the right dose it was just a question of taking a daily pill. The thyroid didn't work, there was a substitute for the natural hormone. Job done. The research funding was for stuff that killed people because there wasn't a clinical treatment.

All has been well for more than 30 years.

Even then I was put under an endocrinologist because I had PPP. I think it's probably even more the case nowadays that if you want to see an endocrinologist, you need to pay. It may be worth it for the reassurance aspect.

Hi 👋🏻 fellow Hashis sufferer here. I'm 37 and was diagnosed nearly 3 years ago. Had been ill for quite some time and largely ignored by doctors and even told to pull myself together my certain family. Turns out I was hypothyroid! TSH was over 100 when diagnosed (no, I haven't got that wrong!) I too was started on Levo and had lots of dose changes over the last 3 years. As a previous poster has said, a lot need T3 but don't get it and I'm one of them. Private blood tests show (nhs won't test your t3 levels) that I convert t4 (Levo) to t3 poorly. However I've not tried to battle for t3 and have just tried to make do with Levo. I feel mostly ok these days although still suffer with the autoimmune symptoms. Previous poster has given you a wealth of info. Vitamin testing is vital 😊 good luck OP

Forgot to actually answer...no it's not normal to be referred to endo. My GP phoned one for advice as my TSH was so high but that's as close as I ever got!

My TSH is 5 despite being on levothyroxine for nearly 3 years, I'm on 75mg. I have been borderline for about 30 years & it took my arguing for a blood test because my hair was falling out to get any action. Has anyone continued to gain weight after starting on medication?

@Nat6999 your TSH should ideally be under 1. You are under medicated and need an increase of Levo.

Im on 200mg and never been referred to anyone

But as a side note

DO ALL OF YOU KNOW THAT YOU ARE NOW MEDICALLY EXCEPT AGAINST PRESCRIPTION CHARGES? APPLY FOR A MEDICAL EXCEPTION CERT AND YOU WILL GET ALL MEDS FOR FREE. NOT JUST LEVO MEDS!

CaramelChocolate how do you get the form & does the exemption include dental & glasses?

Never been referred to anyone, I have 6 monthly blood checks

Been about 7 years now, worked my way up to 125mg from initial 75, recently been reduced to 100

The exemption doesnt include glasses or dental
Only prescriptions
Worth a google

nhs won't test your t3 levels

NHS always used to show my T3 & T4 results if my THS wasn’t within range of being “ normal”

@Nat6999 there's a form that your GP fills out I think. Mine did it for me upon diagnosis. There's only about 7-8 conditions on the exemption list so not hard for GPS to keep track so this should be done for you at the start really.