Underactive thyroid: Hi all I have written in the... - Thyroid UK

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Underactive thyroid

Longinthetooth profile image
30 Replies

Hi all

I have written in the past on Health Unblocked but changed my email address so have started again.

You guys on this site are so helpful & together we can all gain useful & helpful information.

My Levothyroxine started to work (hallelujah, I'm better) but I'm slipping backwards so going to see my GP in just over a week. The last time I saw this particular GP (as there are so many in the practice) she said to me as I was leaving "there's nothing wrong with your thyroid". Bloods all came back "normal" you see. I knew there was, so I had to beg my Endo to start me on meds which he did (25mcg) as he said I might be borderline.

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Longinthetooth profile image
Longinthetooth
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30 Replies
Paula101 profile image
Paula101

By the sound of it, it's your Endo over your GP any time. Thyroid unfriendly GP's who declare "there's nothing wrong with your thyroid, bloods will come back "normal" (that bl@@dy word!)

Longinthetooth profile image
Longinthetooth in reply to Paula101

How many of us have heard that "word"?

in reply to Longinthetooth

Normal! Normal! Normal!, Normal is a setting on a washing machine! I'd love to get a button made and wear it to some appts.

Longinthetooth profile image
Longinthetooth in reply to

Hi Irina

we've all been told the same then?

in reply to Longinthetooth

Absolutely. My understanding is the NHS wants to save money. Over here because of medicare, private insurance and the predominance of private practice docs reimbursed by insurance, often, care seems,IMO, to be based on what the market will bear. More visits, more labs, slower treatment (translate dragging out care over time) can spell much more $$$ for the practice. So both sides of the pond get @%$^&*$ and not kissed-so to speak.

Longinthetooth profile image
Longinthetooth in reply to

Yes, unfortunately it's all about cost. If only more docs specialised in this field. Though, I don't even have faith in my Endo. I had to beg him to start me on medication. He seemed frightened to put me on anything but the difference it made, wow. I was back in balance for the first time in a few years. Just need to up my dosage & should be ok.

It's helpful to know that others go through similar situations, not nice though that we are fobbed off, etc, over the years & have to do a lot of the groundwork ourselves. It's obviously a minefield but wouldn't be with the right testing.

Paula101 profile image
Paula101 in reply to Paula101

Sorry...... need to walk in our shoes, God if only there was a way🤔 Do you think there is another GP you could see at the practice?

Do you want to post your latest results and the forum could take a look?

Paula101 profile image
Paula101 in reply to Paula101

Wouldn't it be funny if we responded "blah blah blah, whatever", it's tempting😉

Longinthetooth profile image
Longinthetooth in reply to Paula101

I only have my blood results from last year before I started taking Levo.

I'd love to say what I really feel but I'd be barred.

Why oh why doesn't someone educate these doctors on testing us suffering individuals further instead of us having to research & research so that we can go in armed with knowledge & have to tell them what is wrong with us. They are pigeon-holed.

Paula101 profile image
Paula101 in reply to Longinthetooth

So long as Big Pharma fund medical schools & dictate government policy, we've only got each other & thank goodness we have, thinking about it.

When did you start on 25mcg? After 6-8 weeks a GP should do more blood tests to check thyroid hormone levels. Is there another GP you can see that you think might be helpful?

Are you taking any vitamins & minerals? As deficiencies can cause all sorts of problems. There are NICE guidelines you can request from Thyroid UK website and you should give these to your GP.

Some people on this forum often test privately for these, using Medichecks & Blue Horizon laboratories. Check out their websites. I'm sorry but I use my phone & cant do hyperlinks. Let me find contact details for NICE guidelines & I'll get back to you.

Also, the body does require some time to get used to an increase in dose.

So unpleasant symptoms should hopefully pass with time.

Longinthetooth profile image
Longinthetooth in reply to Paula101

Hi

I take ashwagandha & a multivitamin.

Thanks to you all for the good advice.

Paula101 profile image
Paula101 in reply to Longinthetooth

I got some Ashwagandha to make tea, but forgot about it. I'll have to remember to try it again.

A note on multivitamins, as other will testify, they are a waste of time, they have lots of things in them we don't need & the absorption of the things we do need are affected.

Best taking individual supplements that your are in particular need of.

When you get bloods done post on the forum then people can check out what Vitamins & minerals you may need.

I've not forgotten the NICE guidelines, I'm still looking 🙂

Longinthetooth profile image
Longinthetooth in reply to Paula101

Ok

Paula101 profile image
Paula101 in reply to Longinthetooth

Just waiting for an email from Louise Roberts at Thyroid UK.

I tried to look at guidelines online but page was closed. I'm sure she'll set me straight. I'll pass on details when I get them.

Longinthetooth profile image
Longinthetooth in reply to Paula101

Thank you.

Paula101 profile image
Paula101 in reply to Longinthetooth

So sorry this had taken so long. NICE guidelines using Levothyroxine (T4) for hypothyroidism:-

cks.nice.org.uk

I read a post with someone pointing out that NICE recommend testing 4 weeks after an increase in dose. Testing SHOULD actually still be 6-8 weeks after an increase in dose.

Sorry again for the delay.

Longinthetooth profile image
Longinthetooth in reply to Paula101

Hi

thanks for this. My Endo started me on Eltroxin T4 in December & still hasn't arranged for me to go back. I phoned his sec who got him to phone me last Friday & he said he would try & fit me in but couldn't promise. I told him how I was much better after starting the med but starting to go downhill again. I feel an increase is necessary but he's that busy I've got to wait. I'm seriously thinking of buying Eltroxin online & increasing the dosage to 50mcg myself, what have I got to lose?

Quality of like not length.

Paula101 profile image
Paula101 in reply to Longinthetooth

His appt to see you is long overdue, but if he can squeeze you in then even better. Don't feel sorry for him even if he squeezes you in, he'll be in receipt of a handsome salary😉

I unable to advise on the buying & taking of extra Eltroxin but someone else might be able to, if you post that particular question as a fresh post? You'll get more answers that way.

Longinthetooth profile image
Longinthetooth in reply to Paula101

Thanks for all this.

Paula101 profile image
Paula101 in reply to Longinthetooth

SlowDragon's post gives you everything to get started 👍🏻

in reply to Longinthetooth

Humanbean's recent post re Goldman-Sachs made this rhetorical question pop into my head. As many doctors seem to be religiously tied to 'normal value ranges' ( and they have been known to change at times by the medical profession-raised or lowered by a small enough amount to put many of us in or out of range) do you think Big Pharma has any input here to increase revenue by having more prescriptions written? Just a thought. In the last 4-5 years (US) statin and blood pressure guidelines have changed just enough to include more people who 'might' benefit from taking Pharma's drugs for prevention. What a money-maker!

Paula101 profile image
Paula101 in reply to

I couldn't agree more Irina 👍🏻🙂

SlowDragon profile image
SlowDragonAdministrator

Are you still only on 25mcg?

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get tested.

Longinthetooth profile image
Longinthetooth in reply to SlowDragon

Thanks for the info.

SlowDragon profile image
SlowDragonAdministrator in reply to Longinthetooth

Don’t take any multi vitamin with iodine in it, especially if you have Hashimotos

Will add links later why not

Longinthetooth profile image
Longinthetooth in reply to SlowDragon

ok, thanks.

SlowDragon profile image
SlowDragonAdministrator in reply to Longinthetooth

Multivitamins are generally not recommended on here. Too little of what we do need, and stuff that we don't need

Best is to test vitamin D, folate, ferritin and B12

Then supplementing specifics if needed.

Though if you have had B12 and folate in multivitamin then test won't tell you true levels. It apparently takes about 4 months for B12 to return to base level.

Links about iodine

drknews.com/iodine-and-hash...

thyroidpharmacist.com/artic...

Longinthetooth profile image
Longinthetooth in reply to SlowDragon

Hi

Thanks for these links.

I rang my GP to ask for an increase of Levothyroxine & she can't go over the Endo's head. I spoke to Endo's sec who got him to phone me. I explained how I was so well but now going downhill again. He will try to see me as my appt is due (got the feeling he's got to try & squeeze me in) but needs blood tests to check. For blood tests I will get early appt, fast & take tablet after, as you advised.

It's obvious that I need an increase. I so hope he prescribes it. You can buy Eltroxin online for £40 but I'll wait & hope he does the right thing.

Just felt a tingling under my armpit this morning & it's a shingles rash. This is the 4th time I've had it in the last few years which is a sign that I have a weak immune system. So, will try & see the doc tomorrow & get it put on my record.

SlowDragon profile image
SlowDragonAdministrator in reply to Longinthetooth

Ask for thyroid antibodies test plus vitamins

Longinthetooth profile image
Longinthetooth in reply to SlowDragon

OK.

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