Help!

[Alicia1984]

Hi Everyone - its been a while since I've been on here and hope everyone is doing as well as can be.

I'm after some advice. I'm currently on 150mcg levo (I was on 200mcg but it was reduced as the Endo thought it was too high) - I was doing ok but last 6months I've been beyond messy. I can't sleep properly, I've got aches and pains, foggy head & my weight is out of control even through I've tried dieting etc.All the stuff that caused me to go running to the Dr to begin with. It has been a massively traumatic 6 months for personal reasons but I'm struggling to pull myself out of it and the Dr's are not interested. I know nobody would ever recommend or suggest stopping their meds but I just don't see the point of taking something that doesn't make me feel any better. Ever since I started taking Levo 8 years ago it's been constantly increased and decreased and yet my TSH never stabilises so to me it just seems pointless. Ever since then its been other stuff, anaemia,various vitamin deficiencies, my immune systems shot and intense chest pains. Before all this I was always super healthy. I went to the Drs originally as I was so tired but with hindsight it was actually probably just my lifestyle living on 4hrs sleep, gymming it for 2hrs a day 6 days a week, working all day then studying all night. I think I was just burnt out and wish I had never gone to the Dr's to begin with. My TSH was only ever a maximum of 10 so yes high, but not compared to a lot of peoples.

Has anyone stopped taking theirs and what happened. I want to stop and try and address things naturally but the Dr has scared me about potential comas etc. Obviously, I'd rather decrease or stop under supervision but my Dr is not a very open-minded person. Or maybe I should just go private? Problem is for various reasons over the years I just don't trust Dr's at all

[greygoose]

I doubt any doctor would help you to stop your levo permanently. If your TSH was ten, then you are hypo and need thyroid hormone replacement.

But, what is pointless is stupid, ignorant doctors dosing by the TSH. Of course it will never be stable if you do that. An increase will send it too high and a decrease will send it to low, and this will continue until hell freezes over, because it is the wrong way to dose.

The most important number for dosing is the FT3. But, doctors know so little about thyroid that the don't know how to interpret it - or anything else about T3, come to that. So, in the absence of the FT3, your doctor should at least be testing your FT4 and dosing by that. Once your TSH gets down to one, you can no longer use it to dose by because, at that level, it rarely reflects thyroid status.

What I would suggest is getting full bloods done privately, if you can. It's very likely that you don't convert T4 to T3 very well, judging by what you say. But you will only know that if you have your FT4 and FT3 tested at the same time.

Details of private testing here:

thyroiduk.org/tuk/testing/p...

You need:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

That will give you a much clearer picture of what is going on.

[Alicia1984 in reply to greygoose]

Hi,

I had these all tested last year privately and it was established by everyone here that no it doesn't convert properly, however my Dr wasn't interested in the results in the slightest and my Endo was even less interested completely dismissing the shear idea of prescribing T3.

[greygoose in reply to Alicia1984]

Yes, a lot of them are like that. But it's usually because they're out of their depth and have no idea what to do about it.

So, you really have three choices: a) find a new endo that knows something about thyroid b) self-treat c) continue to suffer. You're never going to educated the ignorants bs!

[Alicia1984 in reply to greygoose]

I'm torn between new endo (but would mean having to go private) and self treating but other than the gluten elimination and taking supplements not really sure where else to go with that x

[greygoose in reply to Alicia1984]

Do your own tests, and buy your own levo/T3/NDT, whatever you need. It is possible to buy it all on-line.

[Alicia1984 in reply to greygoose]

I've always liked the idea of NDT and previous tests showed I needed T3. I tried to buy some T3 online before and it never turned up and couldn't get hold of the seller. Luckily PayPal got my money back but it put me off trying again as you just never know who you're buying from and NDT other than a private Dr I have no idea where to start with that x

[greygoose in reply to Alicia1984]

Well, you do know who you're buying from if you post a question on here, and people PM you their trusted sources. There are sites where you can buy NDT, too. I don't know them because I don't take NDT, but they're out there. Just ask.

[SeasideSusie Remembering]

Alicia

Ever since I started taking Levo 8 years ago it's been constantly increased and decreased and yet my TSH never stabilises so to me it just seems pointless.

You have Hashi's, and fluctuating results/symptoms is the nature of the beast until your thyroid is totally destroyed. Adjusting dose when there's a hyper-type phase, and readjusting again when it settles down, may be necessary.

You were given advice by SlowDragon in your previous post here healthunlocked.com/thyroidu... about how to help deal with Hashi's.

What are your current thyroid and vitamin levels? Are you supplementing any vitamins?

[Alicia1984 in reply to SeasideSusie]

Last time I had my TSH tested (last July) it was around 2.4. I am actually off to get it tested again in the next week but that's all my Endo will test, nothing else. I have been taking iron supplements as well as magnesium and B12 spray. Oh and also tried a little CBD which was quite good.

[SeasideSusie Remembering in reply to Alicia1984]

TSH is not enough, we need the full thyroid panel to give us a complete picture; however, as you already know you have Hashi's then you don't have to repeat the antibody tests but TSH, FT4 and FT3 are very important - pity doctors don't seem to get this!

Did you test ferritin/iron and B12 to see if you need to supplement? If so, have you retested ferritin/iron to check your level recently? Are you taking a B Complex alongside your B12 to balance all the B vitamins?

If you want to get all the tests done that your doctor wont do, then you could consider a private test with one of ThyroidUK's recommended labs.

For a full thyroid and vitamin panel, the following tests cover everything you need:

Medichecks Thyroid Check UltraVit medichecks.com/thyroid-func...

Medichecks have random offers on a Thursday, but this test was on offer last week so wont come around again for a while. In the meantime, code THYROIDUK will give 10% discount on any tests not on special offer.

Blue Horizon Thyroid Plus Eleven bluehorizonmedicals.co.uk/t...

The difference between the two tests are

B12 - Medichecks does Active B12 (measures what's available to be taken up by the cells) and BH measures Total B12

Total T4 - included with BH but not with Medichecks, not the most important test anyway.

CRP - BH does the standard CRP test which is an inflammation marker, Medichecks does CRP-high sensitivity which which is used to detect low-level inflammation which is thought to damage blood vessels which can lead to a heart attack or stroke.

BH requires 1 x microtainer of blood (0.8ml) for it's fingerprick test.

Medichecks requires 2 x microtainers of blood (each 0.8ml) for it's fingerprick test.

Both BH and Medichecks give the option of venous blood draw at extra cost.

[Alicia1984 in reply to SeasideSusie]

The medichecks ultravit is the one in had before and no I've not had them rechecked. I've only been taken b12 I didn't realise you needed to take a b complex with it 🤦‍♀️

[Marz]

Reducing from 200 to 150 in one go is not a good idea. How is being gluten free going for you ?

[Alicia1984 in reply to Marz]

I know-this is why I have no faith in Drs.

I tried gluten free before but it didn't do alot for me. It was only a month or so though,maybe I should've tried for longer.

[Marz in reply to Alicia1984]

You cannot really see what is going on inside 26 feet of gut - healing the gut is key to our well-being and it is where your immune system lies. The gut wall is only one very thin single cell structure - so very delicate ... lots to think about 😴 Gluten molecules stick to the gut wall and cause inflammation ... I had gut TB at 27 - followed by Crohns - so know a thing or two about guts !

[Alicia1984 in reply to Marz]

So do you think i should maybe given the gluten elimination a go again?I also read we should eliminate lactose aswell,at least in the healing stage x

[Marz in reply to Alicia1984]

If you don't improve by excluding gluten then by all means exclude lactose at a later stage. Just keep foods natural and do not waste money on GF foods that are full of other nonsense. Read up on Hashimotos if you have time. There are no quick fixes ... 😊

[Alicia1984 in reply to Marz]

Will do. Thank you x

[SlowDragon Administrator in reply to Alicia1984]

Getting vitamins tested regularly and supplementing to improve

Many people find strictly gluten free diet helps, trying it 3-6 months ideally, before reintroduce gluten see if symptoms get worse

Many find dairy free instead or as well

Levothyroxine should be high enough to bring TSH down to around one, certainly under 2 and FT4 in top third

If after all this FT3 remains low then you will need T3

Many with Hashimoto's need addition of small dose of T3

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

please email Dionne at

[e-mail]

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levothyroxine

sps.nhs.uk/wp-content/uploa...

[Alicia1984 in reply to SlowDragon]

That's great thank you - you know so much!☺

I still have the original list of specialists but am petrified of potential cost.

I'll give the gluten & maybe dairy a go again xx