So then thyroidies, how you doin'? Some advice, please. Hey Jazzw and greygoose I know you have written previously about this. My situation: I haven't used the sh*t my buffoon GP wants me on for maybe 9 years ( 75mcg levo hahaha). I was so ill, following his advice and he refused to entertain the idea of upping my meds again or referring me to an endo. Under his sh*t 'care', I ballooned 4 stones, my fingers got increasingly stiff and my legs felt like they were made of stone.
I did see a private endo, years ago and he opined that I may need T3 and that as long as all my ducks were in a row, it wouldn't cause an issue for me to self-medicate, although I should let my GP know. I never did. I freaking hate that tw*t with a passion, mostly because, in receipt of his other 'skills', he is also an Olympic champion misogynist.
A new female GP has joined his previously single-handed practice and she seems more amenable to my being a stakeholder in my health; Dr Buffoon's vibe has always been, do as I say, I am Lord, you are a stupid woman ( with 3 degrees but he doesn't know that and I'm not illuminating the donkey)
I've also had a private scan which revealed a wizened thyroid. I have Hashis, then. Dr Buffoon isn't having that scan result, because he's a useless tw*t. I take 2.5 grains of Thyroid S and 12.5 self-sourced Liothyronine /day, all at once, on waking. My latest NHS results are T3 5.8 ( 4.2 - 6.9) TSH 0.02 ( 0.3-4.8) and T4 10.4 (7.7 - 20.6).
I reduced my T3 by 12.5mcg and upped my Thyroid S from 2 grains to 2.5 as I have concerns about the continuing availability of UniPharma T3 - the only T3 I feel well on, having tried all those available w/o prescription. Since then, I have lost 2 stones in weight. I'm sleeping more but I don't care; I'm awake, hale and reasonably hearty when I am awake. and TBH enjoying the extra rest that has come with my semi-retirement .
Just to remind you, my NHS records show that I haven't requested a repeat script for levo in 9 years.... surely the practice must know I'm doing something? Anyway, my Prince, who claimed me from my lonely tower many years ago (although he broke my hair lol) is my champion in all things and if I ever have to go into hospital has promised to let the medics know that I will sue them if they don't allow me to continue on my journey of self-medication. (Those of you long in the tooth will recall Sheila Turner of TPAUK suffering a stroke, then the idiot medics left her off any thyroid meds for six weeks. She passed away. May she rest in peace and not need a thyroid, healthy or not, wherever she is. Love you, babe)
Anyway, Dr delightful the new GP has requested a retest in 6 months. Grey, I know that your take is - if your thyroid hormones are reasonable and you feel well, TSH, not a thyroid hormone at all, has no relevance - is that right? Jazz, I know you have been through a similar situation quite recently but I can't find your post! Help, please. And BTW, everyone else should pile in, too. TIA and sorry this is a long un. There isn't a flare for rant, so you'll have to let me be 😜
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I don't believe TSH is relevant once it gets below 1, no. And taking T3 is usually going to suppress it, because the pituitary considers you don't need it. But, I'm afraid I got a bit lost... Was there a question? 🤣
Thanks for reading gg xx Not strange that in the past 18 months, I've reduced my T3 intake? My TSH has been 0.something for a few years now, but this is the lowest it's ever been.
Oh! The penny's just dropped! I wondered what you were both talking about. lol But, as the comment was addressed to me, I thought it best to just be polite and say thank you. 🤣
Funny I’m had just read your comment in another post “but it is worth trying lower doses occasionally because it's better to keep TSH over 0.04 if possible to do so and still feel well .”
And was going to ask for the source.
Is 0.04 a magic number or just one that was studied?
I am a joker and a midnight toker, but not a doctor.
How do you feel? What do you take/ is there T3 in the mix...that will reduce TSH as your pituitary gets lazy, knows your T levels are good enough, and stops producing TSH altogether.
The difficulties in this? GPs and endos who think that an in range TSH is the gold standard of rude good health. Dr Buffoon told me I was well (in other words, jog on back to the castle, Raps, there's nothing to see here) when he left me wretched, angry and disbelieving at 4.78...the very top of the TSH range. Obvs, he hadn't read the little thyroid paperback in every pharmacy written by Prof Toft, which says something along the lines of, once treated for hypo, the TSH should be around 1, although some need a suppressed TSH... oy vey 🙄
Love your attitude Rapunzel - you are so irreverent it brightens my day 😉
Funnily enough when I gave up trying to get an appointment of any sort with my doctor having tried for three days just after Easter (one of those you-couldn’t-make-it- up involving receptionist stories) anyway, my Prince asked me if I was going to try again for a fourth time on the Friday and I said ‘No I’m not and if I die I want you to sue them.’ As you can see it’s now June and I’m still here - no thanks to them though.
Good luck with Dr Buffoon and Dr Delightful and carry on ranting. In years gone by I used to buy a box of jelly babies, name one for whoever was getting on my nerves then bite their head off. Very satisfying.
Maaan, Fruity I lurve that! Put a bag of babies on the weekend (Prince does it) shopping list xx May not solve the problem but a good rant gets my metabolism on the trot... 😘
Those of you long in the tooth will recall Sheila Turner of TPAUK suffering a stroke, then the idiot medics left her off any thyroid meds for six weeks. She passed away.
I remember that happening. And what astonished me more than anything is that her family were complicit in her not receiving thyroid hormones because "they forgot". (Or so I heard/read at the time.)
My mother was on a ton of prescribed medicines (including Levo) when she went into hospital for her last illness (cancer) and she was there for months before she died. All her prescriptions were stopped almost immediately she went into hospital and the only treatment she got from that point onwards was decided by the hospital. They didn't bother treating her thyroid.
In reply to another post this morning, I said I was reading Grayson Perry “The Descent of Man”.
“….. connections with the mysterious organisation I now call the Department of Masculinity. This is something like the Stasi, an organisation that makes sure no one dissents from the dominant man script.”
I hesitate to add that he was talking about his teddy bear, where he had, for safety reasons, deposited a lot of dangerous ‘stuff’ re: the Department of Masculinity. If you don’t know how clever Grayson Perry is, this message might otherwise be lost.
I think this ‘stuff’ applies absolutely to our medics and the ‘management’ of patients. It’s criminality protected by those who really should know (much) better. Entirely untrustworthy.
In reality it’s difficult to describe Grayson Perry. He is a brilliant artist and makes a study of ‘culture’. He is witty, kind and yet very self deprecating. He is an altogether unusual human being.
He is an altogether unusual human being. Yes he is. I love these desert flower types. Will Self, whilst he can be a self destructive nincompoop, is another one. youtube.com/watch?v=ItX2FVC...
I didnt know this! Poor Sheila! 6 weeks of no thyroid meds! OMG! 😱😱 This is my fear for myself! My children would probably just listen to the doctors... And how could the doctors forget too?????
I'm so so sorry to hear this Humanbean. What an awful thing for them to do. My Mum had her medications all stopped when she was deemed end of life......this caused her to have mutiple mini strokes. Awful..... Even though I had POA for health I was never consulted.......once in a care home they have control- a little known fact!
What is wrong with people, hb? I'd have to be in a coma not to be burning down the house, if someone tried to stop my meds. Maybe I'd be induced into a coma! 🤬
Well my MP was diagnosed with CFS/ME. Eventually she collapsed into a coma and was rushed into hodpital.....blood tests showed she had no T3 or T4.....on thr edge if death surviving on adrenaline. Luckily for her she responded well yo levo and has done well since. That was over 10yrs ago. These days thry probably would not check. Besides which a&e these days can only do TSH too!
just a thought on your mention of someone going untreated in hospital. It made me ponder on the idea of wearing a MediAlert bracelet for T3. Surely hospitals would ignore that at their peril? I will open a new post for this.
Nice one, doldrums. I remain at 65 a vain old tart and will not wear a MediAlert bracelet unless Tiffany starts doing them...what kind of fool am I to rather be dead? 😜
Look, bae I'm with you. Sometimes I wear Hotter shoes because my feet are so phat. Yes, sweet comfort, but they make me feel about a hundred and twelvty three. Hurrah for Gabor G fitting!
Great idea. One snag everytime I've been in hospital (been a fair few in recent years) They served my thyroid hormones with breakfast and all tbe other meds including calci D!. Its always amazes me that they dont take notice of what the instructions say. Also the nurse for the 3/4 of Armour dose used 2 one grain tablets to get the 3/4s because the rule is (she told me) she had to cut in half one table and throw rest away and then cut another one grain tablet and throw 3/4s away to give me a quarter! So glad I wasn't in for long!! 🙈🙈
Rapunzel, I was diagnosed hypo in 2007, since 2016 my TSH had usually been 0.005 and my T4 and T3 are always in range. I did get GP's wanting to reduce my meds because of the low TSH, fortunately the Endo who prescribed T3 said TSH level wasn't important.
I did get a call from a young GP suggesting reducing my meds but I simply said, I was happy with my level of medication and felt well as my T4 and T3 were in range and I didn't understand what TSH had to do with anything since it is not a thyroid hormone but comes from the pituitary. I also stated that I much preferred a life to an existence and essentially said I was taking responsibility for any outcome.
Recently I had a call from the GP pharmacist wanting to change my T3 meds to Roma capsules( I am on Sigma Pharma, not cheap) I told her in no uncertain terms that I would not accept any other brand as I suffer from a number of intolerance including acacia powder used as a filler in thyroid meds.
I just dread any changes in GP or pharmacist and worry how many more years I can fight my corner/ try to educate the medics!! We just have to keep battling on!
We just have to keep battling on! Exhausting, ain't it crimple? We shouldn't have to do this...still, first world problem, innit tho? Trying to check my privilege... 🙄🤪
My TSH in a recent blood test 2 weeks ago was less than 0.005! But I take T3 (50mcg/day) and the FT3 was slightly over the top of the range at 7.2… I only take 25mcg T4/day and the FT4 was below range at only 5.4.
The upshot of all these, seemingly bizarre results is that I feel the closest to my “normal” as I’m ever likely to get (does anyone ever get completely back to normal with this sh*tty condition???) and I can function well throughout the day. I’ve had these levels of results for years now and there’s not been a hint of a sign of either atrial fibrillation or osteoporosis in sight, so that’s another one in the eye of popular medical presumption too!
The only thing we can do is to go by how we feel, not what comes back from a snapshot of what your thyroid was doing at the moment the nurse (or in my case, my daughter who is a qualified midwife) stuck the needle in and took some blood!
(does anyone ever get completely back to normal with this sh*tty condition???) Dunno bae, but I defy anyone to quantify 'normal' once you have a dodgy thyroid. Easy for me to work out when this started - redundancy from City job in back end of 2010, at which point I stopped smoking packs of 20, Yay! ( £14 a pack? FFS, my jazz woodbines cost considerably less, these days!) So here I am 14 years in and have to acknowledge, without much conviction, that some of how I'm feeling is to do with getting older, don't you think? I'm good, ATM, for me. If the payback is crumbly bones when I'm 90 or an increased risk of cardiac issues, do I really have a choice? I think not. Not bovvered 😜
Oh, I did the triple whammy in 2004! Stopped my 35-year 20/day habit, hit the menopause and finally got a hypo diagnosis… put on a stone in weight for each of those and have been struggling ever since with it! I am a little lighter now since those dark days, but still much too big for my liking… I’m sure some of it will be down to aging, my duff hip that’s now on an 18-month waiting list for replacement definitely is, but not all of it. I think a lot of damage was done in the 10 years of having a failing thyroid and being told my results were “normal”, nothing to see here… 🤬
hey Sassy Rapunzel66 my TSH is 0.005! GP did mention and I said that’s the T3 working… you’re managing this with a doctor aren’t you (meaning private) he asked, and I said yes (no longer true) and a prescribing pharmacist. It was left at that. Phew 😮💨
Your T3&4 aren’t particularly high thru the range so I think/say do as you will, take and keep control and enjoy how you feel! 💜
So…. So you’re self medicating, not requested a levo prescription for years, the doc is worried about your low TSH, retesting in 6 months, and if it’s still low what are they going to do, reduce your levo prescription??? 😂😂😂
Oh Rapunzel you crack me up 😂On a serious note..what is happening with uni-pharma T3 now? Has it ceased being manufactured? That was my lifeline for 8 years until recently.
I get you've tried other makes, I couldn't tolerate Tiromel or thyroid S and no way Mercury pharma when I had it prescribed.
Wondering if you've tried thybon henning? With that being quite reasonably priced from Roseway labs. Good luck with your search, I know only too well the headache of it all 😊
thybon henning might be good, but that one seems obtainable only with a script. I'm like a cat on a hot tin roof talking to medics about this, now. Feel so screwed over by the NHS. Still lucky to have it, tho. Thanks for the extra luck, bae. We need some levity occurring with this sh*t condition, what what? xx
Edit to add: Kos earlier in the month. Nada. I'm so sad about this. Poor Greece, a country I love, remains on its knees. They could keep all of us going if they upped their production, and continued with their smiley pharmacists handing over 12 packs at a time but it appears there's nada anywhere. I'm fine for the foreseeable future because I'm taking such a small dose and I had an unexpected bounty from a wonderful girl who decided to check out of this ship of fools, but it is a worry - not planning to die soon, as I'm retiring in July. In the lap of the Gods, some of whom are Greek, innit tho? x
You have an online consult with their prescribing pharmacist I believe. Pop in search bar and see replies. I believe it's £60 for 100 20mcg tablets. Shame you can't try before you buy to see if suits. It's all genuine and above board and would be deemed as having it prescribed so you'd have peace of mindIt does sound like a lot of people get on well with thybon.
Morning! Oh, I have indeed posted about this recently and will update shortly, as all of my blood tests have come back and look stonkingly normal with the exception of my TSH which languishes at <0.01 on both the NHS and Blue Horizon tests. My GP’s response on seeing these results today? To suggest I immediate book another test for thyroid bloods (I only had them done on Wednesday—what’s he expecting will have happened in 2 days?). Not sure that’s a good use of NHS resources, doc…
As Bead’s already said in this chain of replies, what are they going to do—stop your meds?
If you’re feeling well—and happily for you, it sounds like you are—I’d say you don’t need to be bothered. Your FT3 and FT4 are in a better part of their ranges than mine are—Jim had something to say about that on my post. So I’ve reduced my NDT dose by half a grain. I was taking 3 grains and I’ve dropped it to 2.5, which might be too much but I’ve felt so ill this week I figured it was worth a go. I’m going to try putting off that redo of TSH for a few weeks so I can get a feel (for free for once!) about whether I’ve reduced too much or just enough.
I think you’ve probably been on a T3 med so long your hypothalamus / pituitary axis has decided to stop bothering to even pretend to care about putting out TSH. I suspect that happens to a lot of us over time, even in some who only take T4. Unfortunately, that’s been interpreted by researchers wedded to the infallibility of TSH as people needing less thyroid hormone over time. Not entirely sure that’s how it works—I guess I’ll let you know. We’re just one giant experiment to these guys.
We’re just one giant experiment to these guys. Listen guys...do one. You're so right, Jazz and thanks for responding...I found your post, Yay! Anyway, not all guys. Some are fluffy - I married one. Unfortunately, he's not a doctor 🙄😅
Purple rocks! I got my red hat already... I have two thinking about it! And if red and purple are good enough for Diana, POW, they're good enough for me, what what? Love this poem by Jenny Joseph: Warning. Yeah, baby, I'll have that on my tombstone. Warning - Rapunzel lies here, watch it, fellas.
Hi, I was alarmed by your reference to the lady who sadly passed away who was not given thyroid meds whilst in hospital. I experienced the same when I was in hospital for a fortnight. It took them 11 days, following me repeatedly asking where my thyroid meds were. I was ignored. Eventually a doctor, when I asked where my thyroid meds were, said 'why do you need that'!!!!!!. Der! And this was on my medical records!!!!!
Heaven help anyone who is alone and/or incapable of pursuing this.
Hi, I was alarmed by your reference to the lady who sadly passed away who was not given thyroid meds whilst in hospital. I experienced the same when I was in hospital for a fortnight. It took them 11 days, following me repeatedly asking where my thyroid meds were. I was ignored. Eventually a doctor, when I asked where my thyroid meds were, said 'why do you need that'!!!!!!. Der! And this was on my medical records!!!!!
Heaven help anyone who is alone and/or incapable of pursuing this.
Although I have family members who visited, doctors were never available when needed. Nurses do nothing, not allowed to. It was therefore up to me, alone.
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my doctor should be my endocrinologist 
Nurse took full thyroid test
Should I be worried about suppressed TSH
TSH below 0.02
