new here and don’t understand too well

[CrazyStupidLove]

In December last year, I was told that I have thyroid issues, or that my thyroid was working too hard to produce, I’m honestly not even sure, I didn’t understand it when doctor was telling me. My issues were stress, anxiety and I was struggling with joint pain, in my hand, foot and knee. I was having palpitations.

I’ve just been able to access some notes on my nhs app, to see blood results.

My TSH in December was 8.4 and T4 was 14

In Feb 24 the TSH was 5.34 and T4 was 17.7

In May 24 my TSH was 3.02 but don’t seem to have results for the T4…

Can someone explain, in a dummies guide, what it all means?

I found this group today, after searching on Mumsnet. And the posts seem really helpful and informative.

I’m feeling stressed and cold, and down, and tired. Dreading winter and always being cold. My hands are always cold. Sometimes have what looks like Raynauds, white fingers… I still have palpitations but sometimes think this is just stress related and home circumstances being tough. I work full time and can work from home, where I’ll have heating on, water bottle, jumpers, dressing gowns.

Just want to know and understand better.

[SlowDragon Administrator]

welcome to the forum

So are you now taking levothyroxine (replacement thyroid hormone)

If yes, how much are you taking

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Standard STARTER dose of levothyroxine is 50mcg

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

cks.nice.org.uk/topics/hypo...

bnf.nice.org.uk/drugs/levot...

Some people need a bit less than guidelines, some a bit more

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Essential to test vitamin D, folate, ferritin and B12

Have you had vitamin levels tested …or thyroid antibodies

[CrazyStupidLove in reply to SlowDragon]

Sorry, should have said, I’m on 100 Levothyroxine.

I have had loads of other things tested, I think I was low vit D

[SlowDragon Administrator in reply to CrazyStupidLove]

TSH was too high in May 2024….

On levothyroxine TSH should be lower than 2

You were in need of next dose increase in levothyroxine

Please any recent results and ranges for

Vitamin D

Folate

Ferritin

B12

which brand of levothyroxine is your 100mcg

Do you always get same brand

How long have you been on this dose

Request GP retest FULL thyroid, TSH, Ft4 and Ft3

Plus request they test thyroid antibodies if never been tested

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

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

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[SlowDragon Administrator in reply to CrazyStupidLove]

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

Low vitamin D

Are you now taking vitamin D supplements?

If yes how much per day

[CrazyStupidLove in reply to SlowDragon]

No, I need to start. I have been neglecting and trying to take steps. I did buy vitamin D tablets to put in water and drink, but didn’t make a habit of drinking them.

[SlowDragon Administrator in reply to CrazyStupidLove]

you need to know how low vitamin D was at last test as this affects how much vitamin D you need daily

NHS Guidelines on dose vitamin D required

panmerseyapc.nhs.uk/media/2...

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly when supplementing

Can test via NHS private testing service

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Recipe ideas

bbc.co.uk/food/articles/mag...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Find out what your last folate, B12 and ferritin results are as well

[JoBarr31]

I’m so sorry to hear you’re feeling low. I can completely relate - I have been diagnosed with ulcerative colitis and Hashimoto's in the past and also had regular Reynauds - fun fun!

All of this was 100% stress related but I reversed the UC and successfully manage all Hashi symptoms now - no more Reynauds either!

I would love to try to help - DM me if interested ☺️

[Cornwaller]

You have hypothyroidism, your thyroid doesn't produce enough thyroid hormone and as a result you feel crap and cold.

You need to increase your levothyroxine medication until you feel better.

Doctors get all hooked up on blood results, but the bottom line is your levothyroxine should be increased every 6-8 weeks until you feel better, or at least no longer freezing cold. This is the first priority.

There maybe other issues too, like vitamin d and b12. But try and get a trial increase in your levo based on your symptoms.

Best wishes.

[serenfach]

The basics - your thyroid produces hormones that are in every cell in your body - even down to your eyebrows, nails etc. The TSH indicates roughly how hard your thyroid is working, but the two main results you need are T4 (stored thyroid hormones) and T3 (what is in your cells right now). So not having enough slows everything down, hence the cold feeling etc.

The whole system works slowly, so taking Levo will help slowly. It is not like an asprin for a headache. This is the most frustrating part of the whole thing, but is why dose increases are gradual over time to find the levels you as an individual need.

There is a huge amount of info on this site and I have learned about this stuff by reading here, as I knew very little. My GP also knows very little so I had to take charge of my own health, as many of us do here.

There are blood tests you can do at home that will give you a better picture of what is going on - you need to have a T3 result to find out if the Levo is working as well as it should for you. There is oodles of info on private blood tests here - and money off some of them sometimes!

You WILL feel better, it just takes time and a wee bit of knowledge. Browse the site when you have a moment. But the best thing about this site is the knowledge and the support it gives. Keep asking, you never know, the replay to you may be just what someone else is looking for.

Sending a warm hug.

[Cornwaller]

Just a further comment to that I made above.

I'm not medically qualified and my comments are suggestions as to the approaches / discussions you might consider taking with your GP.

Finally, you might consider getting a t3 test in addition to tsh and t4. This would let you see how well you are converting t4 (levothyroxine) to t3 - which is the active form of thyroid hormone. This would be a good guide as to which form or forms of thyroid medication you might benefit from. You might need to have this done privately if you can't persuade the GP to do the test.

Wishing you the best.

[CrazyStupidLove]

Thank you all so much for your helpful comments and explanations. I think I’ve just been a bit in denial and not wanting to think I have something wrong. I definitely think it’s stress related.

I’m going to make a further GP appointment to get tests for the other T4 and T3 and others. I think my gp was helpful to begin with, but I’ve not been asked to go back, and not really been feeling much different. The warmer summer days were lovely. Anything under 17 degrees and I’m frozen 🥶