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
Written by
Alicia1984
To view profiles and participate in discussions please or .
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.
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.
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!
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
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
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.
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?
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.
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 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.
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.
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 🤦♀️
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 !
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 ... 😊
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
tukadmin@thyroiduk.org
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
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Help :-( !! 
Help 
Help with test results please
Help?!
hyperthyroidism help!
