Recently diagnosed with hypothyroidism

[Mrs_Derp182]

Hey all, just been diagnosed with under active thyroid. I've had throat issues for years with my tonsils being removed 4 years ago and many issues still with remaining tonsils. I have also had a goitre and told I had thyroiditis during relevant tests to determine my throat issues. I was originally told its was a thyroid problem despite these and various symptoms as bloods were OK. Feeling really weak and fatigued lately and bloods now say my t4 level is 7.04. Been given levothyroxine. My mum also has this but unfortunately she died 6 years ago and I can't discuss anything with her. What do you find helps? My throat is constantly swollen but has these flare ups and everything is then swollen and more difficult the normal does anyone get this? Can I still have children eventually? Any help and tips would be a help. I am just a little losses at the moment. Thank you 🙂

[SlowDragon Administrator]

Welcome to the forum

Standard starter dose of levothyroxine is 50mcg (unless over 65 years old).

Bloods should be retested 6-8 weeks after each dose increase in levothyroxine

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Looks like you know cause is autoimmune thyroid disease also called hashimoto’s?

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

It takes several weeks for each dose of levothyroxine to have full effect

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

Teva and Aristo are the only lactose free tablets

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

[SlowDragon Administrator]

With regard to fertility....it’s important to fine tune levothyroxine dose and make sure vitamins are optimal

It may take several months to a year to get levels optimal

You should make sure GP aware if you are considering TTC in future

Before TTC levels need to be stable

verywellhealth.com/infertil...

Pregnancy guidelines

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

gp-update.co.uk/files/docs/...

thyroiduk.org.uk/tuk/guidel...

See pages 7&8

btf-thyroid.org/Handlers/Do...

[Mrs_Derp182 in reply to SlowDragon]

Thank you for all your help. I don't think we would be trying yet tbh, it's more a definite thought for us both in a year to two so I'm hoping it'll be stable by then to go ahead ok.

I will be consulting my ENT doctor to as he has tried to send me to a endocrinologist before but refused as bloods where OK regardless I the goitre and thyroiditis diagnosis. I am hoping I will then be bale to see our ofc telephone call with them due to covid. As I think if this is what it is I need this sorted and breathing is getting difficult and I'm even chocking on fluids a lot more. I will keep eye on the other bloods levels when I had bloods re done but I am only on 25mg which I'm concerned with and told next bloods are 3 months. I shall wait 6weeks and tbh if no improvementi will be asking for repeat of bloods and dose increase.

Thank you again

[fuchsia-pink in reply to Mrs_Derp182]

If you get a referral to an endocrinologist, you want to try and see one who knows something about thyroid issues, rather than just a diabetes chap (most of them!). You don't have to see the nearest person to you - you can ask to see anyone in the country, but obv must be reasonably convenient geographically. Most hospital web-sites have little biographies, so look at these for a mention of thyroid, or contact Dionne at Thyroid UK - [e-mail] - for a list of T3 friendly endos. I'm not saying you will need T3 meds - but you're likely to get someone good that way.

And make the most of the expertise of this forum - the people here are very knowledgeable and helpful

Good luck

[Mrs_Derp182 in reply to fuchsia-pink]

Thank you I will keep that in mind whilst calling ENT today. Kinda hoping he will also see it all slotting together and he will refer me as a continuation of care. As we have the evidence my blood test now. Just keen to get fully diagnosed add on the road to getting my throat back to a reasonable breathing level. Last night was the worst its been and had to use pillows to prop me up.

Thank you for help 😊

Louise