Update and even more confused. : Hi all... - Thyroid UK

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Update and even more confused.

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Hi all sorry been waiting for Dr phone call about my blood test results. It's just left me feeling that none know what doing . The Dr I have never seen rang today to review my blood tests results bloods all ok but your thyroid are ok.I said are they ? Well a lot better than they were .I said yes I agree with that .still nowhere near where should be though ? Oh we might tweak it a bit and raise it to 100 mcg . I explained that I had been awaiting this miraculous point where my levels are correct as the Dr who prescribed thyroxine in.may. Didn't address my walking mobility problem as said it might all go once thyroid treated adequately . This Dr laughed at that . I said we'll it's not happening yet and been left a year now. Unable go out. Now getting severe pain if walk suddenly comes on. In hip or right foot. Then ok again not in pain otherwise. Spine a bit at base. I know I have slight arthritic changes hip and knee. Nothing else that serious. To stop walking. This Dr read the results tho they are showing 11.6 less than was last time 12.1. And then said you're not in thyroxine now are you. ? I said yes of course. Oh what are you on at moment then I said 75 mcg. Oh well. We will raise it. Lot better than it was. I said my readings aren't nowhere near perfectly. Thyroid UK have said less than 1 is where you feel better and I am way off. . I said the Dr at chest clinic had advised I was seen by orthaepedics and back to ent as coughing up mucus. Also can be thyroid related. .he laughed again . I said the chest clinic Dr said thyroid can affect mobility as he learnt it at med.school affects hip spine etc. Then he went quiet. Agreed send me to physio next week to assess.. Other Dr said my cholesterol would come down with thyroid levels. He just wanted to put me on statins. I am con fused. X

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greygoose profile image
greygoose

They all want to put you on statins! Statins mean more funding points for the surgery.

Can you give us the exact numbers: results and ranges? Because your FT4 sounds very low. And if your FT4 is low your FT3 is going to be even lower. And it's low T3 that causes high cholesterol. So, by the sound of it, your cholesterol level is not going to drop any time soon! But it will when your FT3 rises.

I think that doctor deserves a formal complaint! How dare he laugh at you! Very unprofessional - especially when he didn't seem to know that much about thyroid himself. Anything and everything that goes wrong in your body can be due to low thyroid - it might not be, but it certainly can. So by laughing like that he's just showing his abysmal ignorance. You did well setting him straight. :)

FallingInReverse profile image
FallingInReverse in reply togreygoose

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👆I second everything in GG’s reply! I am angry on your behalf… you will learn up on your own condition and one day realize how completely and totally ridiculous that doctor was.

I had a doctor laugh at me once (in a conversation about an actual diagnosed condition I had), it was 20 years ago and I still tell the story to this day.

The great news is you got your referral (and hopefully a Levo increase - although as GG asks please share your actual results).

I am so sorry you had to have such an unsettling appointment, take a deep breath, know that it’s not you, it’s just a shockingly under-educated and uncaring medical establishment. Never ceases to amaze me but I am no longer surprised.

Give yourself a big hug 🤗 ! We are all here for you.

in reply toFallingInReverse

Ahh thank you all. I don't know what I would do if wasn't for being able share my accounts so far . You do despair. . Yes I know gps.only know a little bit about everything so don't expect miracles but I was supposed to see the endocrine specialist when I first went to this surgery last November. The gp I saw then opted to ask the endocrine specialist if there was anything else I could take as I hadn't got on with thyroxine or thyronine before they said no then when I tried to book the app in June they said no you have been referred back as Drs been told there's nothing else can give you. As I struggle walking I really wanted to know about how to get better. And didn't know it can affect my mobility. So that was that. Left with just gps.with basic knowledge and differing ideas by sound of it. Contradicting each other .I read that people with hypothyroidism shouldn't have statins . Esp women who may get the bone pains. Just what I need. Rather wait til my levels are thereabouts and see. The Dr August reviewed my thyroid and agreed that was normally what they do. She then decided to keep my dosage at 50 mcg as she thought it was stabilising I thought not. . But couldn't argue. I said I had hoped you would be raising it. We could she said. But won't. Then the next Dr I saw with extreme neck tooth pain instantly said it's too low needs increasing possibly to 100. Will see when review it again. . It was obvious this Dr didn't know he was reviewing my thyroid . When he said you're not on thyroxine at the moment are you. ???? I said yes !! Oh what are you on then not a clue why he was ringing me . Blood tests all.ok. I am pleased about he said. Thyroid ok. . Really. ?? I don't think so. Way off yet. When I quoted under 1 being where should be. He just went quiet. Think he was glad to get away from dealing with me. Send to physio. Been there 2 years back but I could walk no aids then. Not v well but not like this. . They basically go back to the weight problem diet etc.easy to say .I haven't been this weight in my life and as can't exercise its just getting worse. My readings don't include T3.I didn't get chance to ask about that .sure they won't test for it or would have. .

My serum tsh August was 9.2 (0.27-4.2 ) serum free t4 (12.1-22.0)

November serum tsh 5.7 (0.27-4.2)

Serum free t4 (12.0 -22)

I had a second test done of same on 5 Nov duplicated that said serum free the was 11.6 so can't see as that's in the reference range and ok. This Dr must have thought he was ringing with just blood tests results and they were checking my thyroid at same time . To say you're not taking thyroxine at the moment are you. I don't think physio will get me anywhere from experience . Shouldn't make legs like jelly and unable move surely x

I have read none of your other posts and don’t know your history.

But your TSH is still so high. More importantly is that low FT4… so low. And as you already know - you much get a test for that includes FT3. Medichecks or whatever you need to do.

Your symptoms are extreme as it looks like your bloods are extremely low.

Yes it’s true that just because we have a Hashis doesn’t mean that other things aren’t wrong with us. But we can say that with thyroid hormones that low, that alone is causing a whole host of problems for you head to toe.

Continue to advocate for yourself. Build up your confidence. Keep pushing.

Janine159 profile image
Janine159 in reply toFallingInReverse

Thank you I am relieved to hear that it helps a lot xx

tattybogle profile image
tattybogle

how he had the bare face cheek to laugh at what anyone else thinks, when he apparently thinks that a slightly over range TSH with a borderline / or below range fT4 are "ok" , well i just don't know .

if someone was not on levo with those results , the right thing to do would be to tell them they were borderline and needed retesting again in a few wks to see what they showed.

and if someone was already on levo , the right thing to do would be increase the dose ....

saying "they are OK" is not a relevant or useful response for either situation.

it's quite scary that however confused you are , have already managed to understand this stuff better than a GP.

well done you for getting the dose increase sorted . hopefully you will start to feel a bit better in a few wks . no idea if it will help with the walking pain issue. but it needed increasing regardless , so just see how it goes.

Janine159 profile image
Janine159 in reply totattybogle

Thank you it helps a lot to have you all.around advising I sometimes wonder if Dr's know anything .but it's all we have or wait 6 months to see someone who might know . Yes I used to spend my days researching why I felt so ill taking thyroxine 20 years ago long story as always. But it's affected me and was very wary of taking them again but no ill effects from first pill as before . So I was glad I could finally get my readings normal and not having Dr's quoting my thyroid out every time saw one ..if it ever gets to perfect level I hope I do feel better but my walking i Problem won't be taken seriously until then I don't think . My only hope just want be able walk again both my sisters have had problems one replacement knee other replacement hip . But seems whatever causing mine isn't thar bad yet borderline is all x rays ever show . So just have to keep taking pills as they say . Never do you hear Dr's say how do you feel then ? It's always the readings OK or need a bit more . I am going to be ready to say shouldn't this be about how I feel not the readings? I don't Want to live and breathe thyroid problems and who to see . But know from. My 7 years taking them there was little help if you're the ones who don't conform .you are laughed at I had it from a top specialist. Shouted even there was nothing he could do for me as my readings were fine what was I doing there and look all these people waiting outside who were really ill. Not nice at all . Thank you all for helping I will see how it goes xx

tattybogle profile image
tattybogle in reply toJanine159

This might amuse you ... Serenfach posted it the other day :

"I consider these types of consultants "post turtles".

A turtle sitting on top of a fence post.

You know he didn't get up there by himself, he doesn't belong up there, he doesn't know what to do while he's up there, he's elevated beyond his ability to function, and you just wonder what kind of dumb ass put him up there to begin with.

I hope this mental image helps, and feel free to mutter "post turtle" under your breath when you meet a consultant like this, just loud enough for him to hear... "

in reply totattybogle

Thanks. That's very funny. But prob not as so true. Have seen some lovely Drs this year at the hospital. And they were all lovely caring and advising what to do. Tho wasn't their dept . Was nice know there's people who do care. It's not all bad just odd one 20 years ago was a lot different I like everyone thought you just took a pill.And harmless . Two of my sister's were hypothyroid no problems . Took pills like paracetamol . My experience wasn't like that I never felt unwell til treated. Never same since. Have tried it again as did start feeling had symptoms. Hopefully will get better thanks. Xxx .

Janine159 profile image
Janine159 in reply totattybogle

Sorry my t4 was 12.0 ( 12-22.00) November serum Tsh 5.7 ( 0.27-4.2 )

It has cone down to what it was in May . I am glad about may get normality hopefully xx

tattybogle profile image
tattybogle in reply toJanine159

you seem to have two usernames going at the same time Wendy2186 / Janine159 ... or am i going nut's ?

Oh sorry yes one was from my long time ago account. . One needs deleting really. Not sure how. Sorry xxx

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