feeling unwell

[Prosecco1997]

hello I have underactive thyroid , but now it is overactive I’ve been told , since reducing my meds , I have had such an awful feeling oh painful sensitive throat , wierd flutter with tounge and very sensitive gums , I have hashimotos and have nodules, keep getting hot and cold , any advise on what I can do please was on 75 Levi now on 50 Levo , just can’t seem to get it right , been to my doctor says repeat bloods in September?

[PurpleNails Administrator]

What were your results? You need to know the levels when dr suggested reduction.

Hopefully FT4 & FT3 were tested & it wasn’t based on TSH

[Prosecco1997 in reply to PurpleNails]

test results

[Prosecco1997 in reply to PurpleNails]

my latest results

Black white

[PurpleNails Administrator in reply to Prosecco1997]

There’s no FT3 so you can’t tell how well you are converting. Based on TSH & FT4 your drs view is you appear slightly over replaced.

Was test taken as recommended with timing & no biotin?

If you are switching between 50mcg daily & 75mcg you may need to stay in the middle and take 50 - 3 days a week & 75 the rest.

Palpitations can occur with low ferritin for example, have folate, ferritin, b12 & vitamin D been tested?

[greygoose]

You could be having a little Hashi's 'hyper' swing and that's why your FT4 has risen. But it's still not very high, and TSH isn't that low, so your doctor talking about your thyroid now being over-active is rubbish. It just doesn't work that way.

More likely a few dying cells within the thyroid have released their stock of hormone into the blood, cause the FT4 to rise, but if that's the case, the level will go down by itself - especially as you're now on such a low dose of levo - and you will become hypo again. But doctors have no idea how that works. And by September you will probably need an increase in dose again. It is very difficult to get the dose right when you have Hashi's.

[Prosecco1997 in reply to greygoose]

I felt better on 75 , iam very tearful today ache and feel unwell , doctors just don’t listen

[greygoose in reply to Prosecco1997]

No, they don't. They think they know it all and we're just idiots too stupid to know our own bodies. They formulate their precious little 'theories', based on nothing, and anything you say to the contrary is just more proof of how stupid you are, as far as their concerned. Doctors must have the most closed minds of all the professions!

[Prosecco1997 in reply to greygoose]

They just look at me as if I’m over anxious , as I’m suffering with bad anxiety at the moment , my throat is very painful and I gag when looking left and right , I have a heart rythym problem , so I’m getting pushed from one to another , so not getting right treatment , are flu like symptoms normal with a flare up

[greygoose in reply to Prosecco1997]

Anxiety is a hypo symptom. And it sounds as if your thyroid is swollen. What do they say about that?

Flu-like symptoms are more common with hypo, And you could still be hypo even with that high FT4 and low-ish TSH, if you're not converting that T4 to T3. You really need full thyroid testing.

[Prosecco1997 in reply to greygoose]

He just looked at me , and said I can’t be tested until September, as it takes 12,weeks to reset itself , I’m taking paracetamol but it’s not helping

[greygoose in reply to Prosecco1997]

I could use a really rude word there! 12 weeks be damned! 6 weeks is quite sufficient. I don't know how these doctors manage to live with their ignorance.

[Prosecco1997 in reply to greygoose]

Thankyou , they just keep making me feel , like I’m to over anxious, so then I go with what they say knowing it’s not right , very tearful today , could that be due to thyroid levels dropping

[greygoose in reply to Prosecco1997]

Oh, yes, it most certainly could!

Making you feel over-anxious is just one of the ways they have of manipulating you. And they do that to cover up their ignorance, hoping you won't notice they haven't a clue what they're talking about. It's not easy to stand up to them but you really have to try because it's your health at stake, and they couldn't care less!

[Prosecco1997 in reply to greygoose]

Just phoned doctors said I want my blood test bought forward , now on 13 august at 11.20 , should I take Levo that morning?

[greygoose in reply to Prosecco1997]

No, you should leave a gap of 24 hours between your last dose and the blood draw.

I hate to say this but 11.20 is not a good time to have a blood test for TSH. It will be coming to its lowest point, which will not help your case for an increase in dose, given that doctors only tend to look at the TSH. They just don't seem to understand how the TSH fluctuates throughout the day - or they don't want to understand!

[Prosecco1997 in reply to greygoose]

What time would you say is best

[greygoose in reply to Prosecco1997]

Before 9 am. It starts to drop sharply after that.

[Sparklingsunshine in reply to Prosecco1997]

I know its really hard but try and avoid getting tearful when dealing with doctors as they will just assume you are an over emotional woman and try and palm you off with antidepressants. Its so bloody patronising.

Get angry instead, obviously not outwardly but internally. Let it help you to be assertive and advocate for yourself. Its sadly a fact that we have to become our own advocates, as for the most part doctors really dont know about thyroid and care even less.

It doesnt matter to them if you are feeling terrible, all they care about is keeping your numbers in range and covering themselves.

Learn as much as you can about thyroid, write it down and take it in or better still send a letter or email politely but insistently showing you know your stuff and stating that you feel better on 75, that you prioritise quality of life over blood test numbers and if necessary you will sign a disclaimer taking full responsibility.

Or you could say you'll source your own Levo if they wont budge. Doctors hate that. Your health should be a partnership, not a dictatorship. And its you that has to live with the consequences every day, not your doctor.

[Prosecco1997 in reply to Sparklingsunshine]

I have been suffering with my anxiety realy bad don’t know if this is a side effect , but my thyroid /throat and all symptoms come back since reducing , can’t seem to get it right

[Prosecco1997 in reply to greygoose]

I’m realy considering going private , if I can , but order pends on prices , can you recommend any good thyroid specialists , I live in Northampton nn2 , don’t mind travelling a bit

[Prosecco1997 in reply to Prosecco1997]

seen thyroid doctor at hospital, but he discharged me on my first visit ?

[greygoose in reply to Prosecco1997]

I'm afraid I know nothing about private specialists in the UK, I live in France (and I don't even know one I'd recommend here!).

Write a new post and ask people to PM you recommendations near to you.

[Gerry1969 in reply to Prosecco1997]

I had the same thing today. My TSH is constantly low 0.02 but T4/T3 mid range. Doc told me that the NHS doesn't look at T4/T3 despite me having a whole chart going back years to 2015 with almost identical results and remaining stable / normal energy levels. So frustrating. He said if I didn't reduce my dose, I'd get thyroid cancer.

[Prosecco1997 in reply to Gerry1969]

how frightening to hear that , realy makes me worried going to see a doctor these days , do you suffer with a painful thyroid

[Gerry1969 in reply to Prosecco1997]

No pain. Just terrible fatigue when I'm not medicated enough. Brain fog too. To be honest, it's more frightening going back to that than the threat of thyroid cancer!

[Sparklingsunshine in reply to Gerry1969]

I'm with you all the way, and pretty much any sane person would be, quantifiable improvement in symptoms and quality of life now vs a vague, unsubstantiated very minor risk at some point in the future, which might never happen. Hmmmm.

[greygoose in reply to Gerry1969]

He's lying! Stupid man. Just ignore his scare tactics.

[humanbean in reply to Gerry1969]

I would ask for proof of the "over-treatment leads to cancer" claim. I've never heard that before, and frankly, I don't believe it.

[Sparklingsunshine in reply to humanbean]

I'm more concerned if this doctor believes it, if he does he needs to read thyroid for dummies and if not then he shouldnt be practicing medicine and trying to scare the crap out of his patients.

[Sparklingsunshine in reply to Gerry1969]

Honestly doctors really shouldnt be allowed to spout such BS. Taking too much thyroid meds doesnt cause climate change, the sky to fall in or a zombie apocalypse, andnor does it cause thyroid cancer. It can make you feel very unwell but its reversible once you drop your dose. They should be prosecuted for such scaremongering.

[tattybogle]

i find it better to adjust by 12.5mcg rather than 25mcg, i find 25mcg adjustments far too heavy handed if i was basically feeling ok.

yes , it can take many weeks for the body to adjust itself and reacclimatise to a lower dose . For me , week 4/5 is too early to tell , the first few weeks i know i can feel lousy and pretty underdosed , even on a dose that dose eventually feels fine once my body has properly adjusted to it ..........week 6 -8 is the earliest time to asses how it feels , for me at least .

since your fT4 was over the top , it might be better to ask to try 62.5mcg mcg for 3 months rather than go straight back to 75mcg .. adjusting by smaller amounts can prevent yo yo dosing.

62.5mcg usually prescribed as "50 / 75 alternate day's "as 12.5mcg tablets are available but stupidly expensive (some of us don't get on with alternating and prefer to cut a 25mcg tablet in half to take same dose every day )

if you can possibly find a dose that you feel ok on which also keeps fT4 in range , that is preferable to running over range fT4 long term.