Update on the dreaded G.P appointment… - Thyroid UK

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Update on the dreaded G.P appointment…

JoJoloveschocolate profile image

Just got back from my appointment with the G.p (Copied a bit of history from my last post for reference. )

Well…it was horrible, but to cut a long story short - he agreed on a small increase in levothyroxine from 50mcg to 75mcg. Although it was a long, arduous process, and he made me feel as if I was making a fuss over nothing and that all my symptoms/issues could be due to other things (I presumed he meant CFS/ME as I was diagnosed in 2018/19)

I said I’d had a whole load of other blood tests that were all apparently ok (have taken advice on here about improving/maintaining ferritin level and vit d level which was about 70). He said it could still be something else. I said well my mum has R.A and my finger joints have been painful. Oh no, he said I don’t think we have to go down that road! Ha! So…I sat there confused and wondering which road he was prepared to go down because he wasn’t keen on increasing my dose at all as he said my last tsh was 1.9 “normal” and he said he doesn’t want to overmedicate me and the drop in t4 from 11.4 to 9.8 wasn’t a significant drop. I said “well it sure feels like it to me!! Oh I didn’t mean it like that! he said. I mentioned referral to an endo if he couldn’t help and he didn’t like that either. He seemed to take offence at everything I asked/said. Then he rattled on and on so much about how it could all be down to “other things” but didn’t want to say what “other things” and made me feel like none of my symptoms were thyroid-related and the increase might not be the answer. Gawd.

Now my head is all mashed and I’m doubting myself that it really is actually my thyroid that’s the problem. I feel like I’ve gone a bit mad and pushed in the wrong direction now and am really worried about taking the 75mcg tabs in case they make me explode in an overmedicated state! I don’t know why the tsh went down/up/down, and the t4 went down as well in the last test. (all done as per protocol from this site)

History:

18th May NHS :

t4 9 (7-17)

tsh 4.73 (0.20-4.50)

23 May started levo 50mcg

had weird hip pain at first on levo, but started to feel a lot better about 5 weeks in, some symptoms subsided/eased. Constipation totally resolved!

NHS test 18 July:

t4 11.4 (7-17).

tsh 1.71 (0.20-4.50)

TPO 4 Kiu/L (0-9)

Then, in August I started to feel unwell again (symptoms creeping back in/up, joint pains and cramps feeling hot/cold, dizzy, mouth ulcers, stiff jaw) did a medichecks finger prick test to see what was going on:

Medichecks 22 Aug 2023:

t4 14.3 (12-22)

t3 3.5 (3.1-6.8)

tsh 2.830 (0.27-4.2)

tgab 262 (0-115)

tpo 12.5 (0-34)

sent results to practice and triage nurse booked for an NHS test 4 Sept 2023 to check results:

t4 9.8(7-17)

tsh 1.96 (0.20-4.50)

No one contacted me (I presume because the results were what they call “normal” . Still unwell with increased ibs, joint pains, sciatica etc (same as before I started levo) so I booked an appointment with gp

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JoJoloveschocolate
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55 Replies
SovietSong profile image
SovietSong

I can relate to all those symptoms of being under medicated.The joint pains and mouth ulcers were constant and the constipation was awful.Headaches on waking which lasted all day were another big one of mine.My GP sent me for X-rays of my hands which all came back clear(of course they did) and told me to take paracetamol for the headaches!!Hopefully this increase to 75mcg will see you improve.You have been on 50mcg since end of May?

JoJoloveschocolate profile image
JoJoloveschocolate in reply to SovietSong

Thank you so much for your reply. Gosh, yes I’ve been having headaches too. I’ve had a bit of constipation for years, but this was off the scale! Yes, I’ve been on 50cg since 23 May this year.

SovietSong profile image
SovietSong in reply to JoJoloveschocolate

That’s quite a time to be on a starter dose of 50mcg.I’d say your body is crying out for more t4.Going by those numbers there’s plenty of room for increase.Most people I know end up approx 100-150mcg daily.Are you booked in for more bloods with GP in 6-8 weeks time or will you test from home?

JoJoloveschocolate profile image
JoJoloveschocolate in reply to SovietSong

That’s what others have said too. I tried to get an increase sooner than today but had to jump through hoops of more blood tests and then triage and then waiting for an appointment. Thank you so much for your reassurance. I started to worry that the tsh was showing too low for an increase and maybe it is all related to this “other” mysterious illness that the GP won’t test for 🤣 I felt like saying - can we just sort this one out before we add anything else in!!! The Gp gave me a blood test form and said to get it done in 8 weeks time for thyroid function tests which I think will be tsh and he did say he would test t4 too. Thank you for replying.

SovietSong profile image
SovietSong in reply to JoJoloveschocolate

Yes most GPs mine included only test t4 and tsh.My tsh was at 8.07 when I had most symptoms but my GP wouldn’t take any notice as I wasn’t over 10.I’m just getting back to where i was and my tsh is currently 0.27.

JoJoloveschocolate profile image
JoJoloveschocolate in reply to SovietSong

Oh no! I felt terrible when my tsh was 4.7, but I had that test done in the afternoon so I guess it could have been a bit higher if I’d tested in the morning. I dread to think how I would be with a tsh of 8.07 though!! I would probably have been permanently in bed!

SovietSong profile image
SovietSong in reply to JoJoloveschocolate

I know exactly where your coming from.I had X-rays,blood tested for everything,had to wear a blood pressure monitor for 24 hours as I had palpitations.They refused to believe that it could be one thing that was causing everything.

JoJoloveschocolate profile image
JoJoloveschocolate in reply to SovietSong

Blimey! I feel for you. I was diagnosed with Cfs/ME in 2019. I said to the GP if the antibodies show autoimmunity/hashis then that might account for a lot of issues that have been going on for years. He did not like that comment one bit! Are you feeling better now? x

SovietSong profile image
SovietSong in reply to JoJoloveschocolate

Yes I’m almost there thank you.I was over medicated on 150mcg but rather than slowly decrease my GP saw fit to drop straight down to 100mcg.That’s when I started to get all the issues.I’ve been round the doors so to speak trying to find my optimal dose.Tweaking it this way and that.It’s hard to be patient when finding the sweet spot as it takes approx 6-8 weeks at a time for each dosage.I find this the hardest part and usually gets worse before getting better.I’m currently taking 135mcg daily and is best I’ve felt for over a year.I’ve no doubt you’ll get there too.

JoJoloveschocolate profile image
JoJoloveschocolate in reply to SovietSong

Oh that is music to my ears! So happy you are almost there. I know what you mean about being hard to be patient. When I first started the 50mcg I thought that was it - job done! 🤣🤣I wasn’t aware of how long it takes for things to level out again and that more issues/symptoms can crop up, that the dose needs to increased/tweaked as you go along and that it all takes such a long time. No quick fix! I’m more prepared now thanks to the info on this site and everyone’s help. Another thing I learnt was that it takes a while to get tour head around everything and take it all in. I don’t feel like such a newbie anymore…I’m learning how to be…how things go. x

SovietSong profile image
SovietSong in reply to JoJoloveschocolate

Your defo in the right place for help and support.If not for this site I dread to think what state I’d be in.

JoJoloveschocolate profile image
JoJoloveschocolate in reply to SovietSong

The whole system is so very bizarre isn’t it. I’ve been thinking about it again today. I was diagnosed with CFS/ME which there are no actual tests for. It’s easier to get lumbered with a “diagnosis” for something that doesn’t show up in the blood tests than it is to get a definite diagnosis for something that does show in the bloods. Even at my appointment the Gp couldn’t bring himself to say yes you have hashimotos. He just said hmmmm, errrr….well, I suppose the antibodies suggest a degree of autoimmunity, but there could be other things. These mysterious other things that he didn’t then want to name….or discuss….or pursue…or test for…I find it all weird. It’s like being trapped in a strange kind of maze with no way out…a puzzle with no answer with a quiz master that doesn’t even understand the game!! The whole situation is driving me a bit nuts!

Jaydee1507 profile image
Jaydee1507Administrator

Unfortunately part of being hypo is learning to become your own health advocate and allowing your doctors ramblings to fall on deaf ears. You just need to press ahead with the courage of your convictions that you are right and he/she is completely wrong. Perhaps try and track down a GP that suits you better at your practice.

So according to your latest NHS test your FT4 is still only at 28% of the range so you have a way to go before you get optimally replaced.

Regardless of whether the practice contact you following a blood test you need to get in touch with them and insist on an increase should it be necessary. So long as a result is within range they will likely think its fine when it really is not.

Just to make you feel a little better, a relative of mine is not long diagnosed hypo. Started on 50mcgs Levo and recently retested. Her TSH is still above range and despite her leaving messages for a GP to contact her they haven't got back to her after a week of trying. You can see how people get left under medicated and sick if they aren't on the ball and on the case!

Also healing is not in a straight line. I know its natural to think that if you take more thyroid hormone then your blood result numbers should fall/increase correspondingly. This just isn;t the case in reality as your body has put in lots of coping mechanisms while you have been getting more and more hypo of a long time and takes time to even itself out.

Have you tried a strictly gluten free diet yet? This helps many Hashi patients.

Healing graph
JoJoloveschocolate profile image
JoJoloveschocolate in reply to Jaydee1507

Thank you so much for your reply, Jaydee. I’ve gone into anxiety overdrive! I think I read on here somewhere that anxiety can also be hypo-related. Mine has gone supersonic today. The Gp who offered me the thyroxine trial was lovely. She phoned me a few days after my test as she knew I’d had a fingerprick test via Boots online Doctor that showed “mildly underactive thyroid” and she tested me again without any issues and then offered the trial. I wanted an appointment with her, but the appointment link they sent to book the appt. only had times and dates and no Gp names. I have managed to sort out online access to my records and blood tests now so I’ll be able to see every time. I was worried that the tsh dropped so dramatically, then went up and then went down even though the t4 dropped again. It made me wonder of my tsh is slow to respond when the t4 falls. You’re so right though - when I felt like I was improving and found out my t4 had gone up I just expected it to hold steady or even climb a bit more so I was shocked when things seemed to be going backwards! I’m beginning to understand that it all takes time and as you say. That graph is spot on🤣. I have been thinking about gluten free. I mentioned Hashis to the Gp but he sort of skirted around it a bit, saying the antibodies can show a degree of autoimmunity, but not to worry about it! Thanks for your kindness and help.

Yeswithasmile profile image
Yeswithasmile

yes hopefully you will see an improvement once established on the 75mcg dose. However you may need another raise and won’t know until you try.

I feel for you. Yet again a dr has demonstrated his lack of knowledge and lack of support for a patient. You ended up doubting yourself. This is a common theme with people who suffer from quality of life issues. You’ve been subjected to gaslighting. I just think we wouldn’t put up from this in a personal relationship but we are continually subjected to it by doctors.

My opinion for what it’s worth is you are undermedicated. That’s the reason for your symptoms. Do not doubt yourself. Your gp is not living your life in your body.

Good luck x

JoJoloveschocolate profile image
JoJoloveschocolate in reply to Yeswithasmile

Thank you for your thoughts and opinion! I really, really do appreciate it. The doctor said - oh, we can try the increase, but this might not be the answer…I nearly said to him…maybe not, but what if it IS the exact answer!! I felt like he was spinning me around all the time and perhaps was getting at some kind of mental health issue rather than thyroid. That happens sometimes if I dare to mention CFS…(which might even have been hashis all along!). Thank you for you support x

Yeswithasmile profile image
Yeswithasmile in reply to JoJoloveschocolate

Oh I am sorry for you. We have all been there and know exactly how you feel. Trouble is I seem to have turned into this angry person now. So I’m sorry for my blunt reply!

It’s just frustrating that after years of enduring your situation at the gp, it is still happening.

I would say that you need to trust your instincts, try a raise and see how you feel. Sometimes you feel worse for a few weeks before you improve and it’s a lengthy journey. However you can feel better but left to your doctor, you’d be struggling on with little hope of ever improving.

Regarding your symptoms, personally I feel better with ft4 at half way through the range. Even slightly off either side and I can feel joint pain, lack stamina, etc. we are all different but I found that others experiences helped me work out where I needed to be.

I have numerous non diagnosis as well. Fibro/me/hypermobility but proper thyroid levels was like serious pain relief.

I wish you nothing but positivity for your thyroid journey x.

JoJoloveschocolate profile image
JoJoloveschocolate in reply to Yeswithasmile

I just broke down and had a cry. Thank you for helping me. I didn’t find your reply blunt at all. I know exactly what tou mean though about turning into an angry person…that’s definitely how I feel. It has been playing on my mind thinking - what if this has always been hypo/hashis and not CFS…or - what if I have CFS now due to being undiagnosed for years…have my doctors been keeping me ill…All these things have been running through my mind. Over the years I’ve had tsh tested and it has been steadily climbing. I’ve felt sure in the past thyroid was my problem, but then put it out of my mind when they convinced me I had CFS. Then I wonder if they ever tested antibodies before. Today the Gp told me not to worry positive tgab antibodies/autoimmunity! Thank you so much for sharing your experiences. I would love to be half way through the range and see how I feel at that point! I have hope that things may well get better now, after a few weeks of feeling iffy on the increased dose - that definitely happened to me when i started levothroxine. I got awful hip and groin pain that faded after about 4/5 weeks in. xx

Yeswithasmile profile image
Yeswithasmile in reply to JoJoloveschocolate

Ahh sometimes it does you so much good to realise that you aren’t alone in your struggle! We all feel your pain!

Thank you for being kind about my bitterness Lol . I will try to do better.

I don’t believ it’s a conscious decision on the part of the doctors to keep you ill. I think there’s a number of factors that keeps them clueless. I begged for thyroxine for 8 years before I got it. Even then I didn’t realise the extent of what I could do by taking control of my own health until 2020. It seems to just take time to get my brain fogged grey matter to get to grips with everything. We all do it in our own time. Luckily I stumbled across this forum for a start. What a godsend!!

So… yes the hip pain etc just hang in there. You will find you endure more than you thought you could you may also waiver in your determination to reach wellness, it’s all natural, it’s hard and no one understands! But we are all on this journey and there are such good stories of people improving that we know it’s possible and know that we are better helping ourselves.

Sending you all my positive wishes and a there there for your gp appt, ignore them. You are right they are wrong 😊

JoJoloveschocolate profile image
JoJoloveschocolate in reply to Yeswithasmile

I don’t find you bitter at all…you’re lovely! Maybe you’re like me and have different levels of bitterness!! 🤣 A bitterness dial…that goes all the way up to 11 and starts spitting electricity when dealing with G.Ps. Gosh - you’ve hit the nail on the head when you say about brain fogged grey matter getting to grips with everything…that’s exactly how I feel now…that I’ve been so tired and ill and brain-fogged that I’ve just gone along with everything, trusting, believing. It’s like I suddenly collapsed through the door of this forum and a crowd of people threw buckets of water over me…woke me up…and then dried me off…and sat me down with a brew and a packet of custard creams! Massive thank you 🤣 xx

Yeswithasmile profile image
Yeswithasmile in reply to JoJoloveschocolate

Well thank you ☺️. Although some would beg to differ 🤣 but what I’m sure everyone finds lovely is that you feel so comforted from being here. Your description is brilliant!

Thank you x.

Sparklingsunshine profile image
Sparklingsunshine in reply to Yeswithasmile

I dont think you come across as bitter at all, just realistic and pragmatic about the ability ( and I use that term loosely) of the NHS to make us well. Like many on here, at the start of my thyroid journey over 3 years ago I naively thought Levo, regular blood tests, dose tweaking and input from my GP would make me well.

I was very wrong. They left me on 50mcgs of Levo for far too long and it was during the pandemic I didn't like to make a fuss. I've also found that having been diagnosed with Fibro 16 years ago, everything gets blamed on that. It's a very convenient label for doctors to cling to when they don't know or don't care enough to investigate what's going on.

I've lost a lot of faith and respect in the medical profession and prefer to have as little to do with them as I can get away with.

Yeswithasmile profile image
Yeswithasmile in reply to Sparklingsunshine

Oh thanks. I’m so glad that you don’t think I’m bitter either!!

I am 100% with you on the medical profession and would rather avoid. I tell them very little and with my prescription I just grab and go.

I’m sorry you have the fibro label. It certainly can impede any alternative diagnosis apart from ‘depression’. How many times did they ask that??? My reply was always ‘no! I’m not depressed I’m just in pain!’

I’m so glad to know you’re here though and like the rest of us finally taking control back! Go us!! 😁 x.

JoJoloveschocolate profile image
JoJoloveschocolate in reply to Yeswithasmile

I’m also in the avoid whenever possible group! I’ve also got the fibro label as well as the cfs label. I thought today when he said my symptoms could be a result of “other things” that he was talking about cfs/fibro…then afterwards I thought he was actually perhaps hinting at depression…or hypochondria. When I was explaining my history he actually sighed and rolled his eyes!!

Yeswithasmile profile image
Yeswithasmile in reply to JoJoloveschocolate

Well not only is he a quack he is a rude quack. Makes you wonder why the do the job. You made the effort to go to see him at least he could be respectful. No excuse for that.

Sparklingsunshine profile image
Sparklingsunshine in reply to Yeswithasmile

I've been fobbed off with anxiety, I remember when I started getting weird Neuro symptoms and asked for a referral to Neurology to check it wasnt MS or a tumour my GP asked in a very patronising way if I was anxious about my health. Well Doh yes I am but the symptoms are causing the anxiety, not the other way around. It made me so angry 😡

JoJoloveschocolate profile image
JoJoloveschocolate in reply to Sparklingsunshine

Sorry to hear that. I know exactly what you mean. I feel angry about it all too - bloody awful treatment of people who are not well. Terrible state of affairs. Of course we get anxious…because they don’t diagnose us or treat us properly! Going to a GP appointment is my main source of anxiety! I didn’t mention anything about anxiety/depression/feeling down with it all when I saw my Gp today because I knew he’d probably latch on to that as the reason for the symptoms. Some of them seem to want to blame it on anything but thyroid…maybe because they don’t understand it well enough. I don’t get it at all - how this is allowed to go on.

Yeswithasmile profile image
Yeswithasmile in reply to Sparklingsunshine

What a ridiculous question! Mind you they obviously weren’t!

I notice from one of your posts that you’re b12 deficient and wondered if you manage to sort out your neurological issues?

As for the anxiety question… I like to reply ‘is it cos I is woman?’ Followed by inwardly saying ‘you massive discriminating w*nker’ just because it makes me feel better 😐

FancyPants54 profile image
FancyPants54 in reply to JoJoloveschocolate

My controversial thoughts are that they just dump women with the diagnosis of CFS or ME or Fibro. if they can't think what else to do. And it don'ts take much for them to get to that stage. Once that diagnosis is on the patient records they dismiss everything else as being down to that diagnosis and leave you to it.

Half of it could probably be avoided if they really understood hypothyroidism, adrenal insufficiency and vitamin B12 deficiency. And if they had any understanding of vitamin and mineral importance.

That's just my thoughts of course. But I refuse to accept any of those diagnosis. I just won't let them do it. I keep out of their way as much as possible and self-treat my thyroid now and about to start self-treating injectable B12. They cause more harm than good.

JoJoloveschocolate profile image
JoJoloveschocolate in reply to FancyPants54

I’ve been thinking the same way. I’ve been labelled! Before I was diagnosed with cfs I’ve found out that my tsh was just under 4 and before that is was never under 2.5.Since I joined this forum, I’ve read a lot of posts that, if I remember correctly, say something along the lines of normal thyroid tsh is closer to 1, the thyroid is struggling at 2 and pretty much hypo at 3. My confused brain may have mixed that up a bit though 🤣. I do remember asking my gp years ago if it was thyroid related…no, no, bloods all normal, came the reply…I “took” the cfs diagnosis because I didn’t know any better. I wish I had known then what I know now.

SlowDragon profile image
SlowDragonAdministrator

well done for sticking to your plan and getting dose increase

Your results are clearly showing you are under medicated

Which brand is your 50mcg tablet

Ideally you wouldn’t change brand as you change dose

Retest again in another 2-3 months

Next time…..try to get appointment with the other nice GP

JoJoloveschocolate profile image
JoJoloveschocolate in reply to SlowDragon

Thank you Slow Dragon!! I thought of you when I was in my appointment. I stood up for myself although it was such slow/hard going. He’s given me additional 25mcg which are “Wockhardt,” to take with the 50mcg Teva. I had a feeling that would happen, but I just snatched the packets from the pharmacist and ran off! I have a blood test form and he told me to book for 8 weeks time. I’m just hoping and praying it’s all easier next time, but knowing my luck it won’t be. I definitely don’t want to see him again, but there doesn’t seem to be any choice in it on the booking system. xx

SlowDragon profile image
SlowDragonAdministrator in reply to JoJoloveschocolate

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

So unless you’re lactose intolerant you should be fine on Wockhardt

Perhaps possible to choose GP if book in person or on phone next time

JoJoloveschocolate profile image
JoJoloveschocolate in reply to SlowDragon

No I’m not lactose intolerant so should be ok. Good idea to phone next time…although I’ve just had a thought that their recorded message says something along the lines of using the online triage system if you want an appointment. Urrrgghhh. When I sent my last message, I saw it had been described as “longwinded. Might just be a review.” I thought the details might help the gp but it was a total waste of time and ebnergy really putting all the relevant details because the gp didn’t bother to read it and had no clue of why i was there today anyway!

SlowDragon profile image
SlowDragonAdministrator in reply to JoJoloveschocolate

Sounds about typical

This is not a rare disease…..there’s 2 million people in U.K. on levothyroxine …..but rarely managed well

many GP’s are utterly clueless ….as you found out today

one in 10 women will develop hypothyroidism

FancyPants54 profile image
FancyPants54 in reply to SlowDragon

But we are women, and often past fertility, so we don't count anymore. Or that's how it feels.

Stills profile image
Stills in reply to FancyPants54

Your comment is exactly how my only available by phone GP makes me feel especially as I have an existing AI condition which is rare and he hates that I’m knowledge about that. I suspect I’m sub clinical from what I’ve read here and I’m dreading having to start trying for tests and scripts. Everyone here is so brave.

greygoose profile image
greygoose

The problem with thyroid symptoms is that they're all 'non-specific' - i.e. they could all be due to 'something else'. I'm not sure if doctors are aware of this and deliberately use that argument to thwart us, or if they're just too dumb to understand why.

Thyroid hormone - specificially T3, which they don't even test - is needed by every single cell in your body to function correctly. When there's not enough to go round, the body has to - unconsciously - 'make a choice' about which cells get how much. And if T3 is really low, some receptors are even switched off. But every body makes a different choice, it's not always the same receptors that are switched off, or on reduced rations, it can be anywhere within the body. Therefore, symptoms will occur randomly anywhere within the body, and won't be the same for everyone. We all have our own individual symptom list. Once you understand that, you can see why just about anything and everything can be a hypo symptom, and probably is. So, a doctor telling you that your symptoms are 'nothing to do with your thyroid' is totally and utterly illogical. How can they possibly know?!? They can't. They're just gaslighting you and the thing is not to give in to it.

Another typical ploy of theirs for not increasing doses - which they hate to do! Anyone would think the cost came out of their own pockets! - is to say something like 'we don't want you tipping over into hyper'. This is physically impossible because the thyroid cannot suddenly regenerate and start over-producing hormone. And, if what they mean is 'becoming over-medicated' that is not something that is going to happen suddenly. I had a doctor tell me that when my TSH was 9! And is in any case extremely unlikely to happen when your TSH is 1.9! It just doesn't work like that. What's more, it's not about the TSH. You're only over-medicated if your FT3 is well over-range. And, if by some fluke you did become over-medicated it's not that big a deal. You're not going to drop dead on the spot. Either you would start to feel so unwell that you'd do something about it, or it would be picked up on at the next blood test - which is a good argument for testing 6 weeks after a dose change and not waiting 3 or 6 months!

You have to learn to play them at their own game - if it is a game and not just them putting on a demonstration of their ignorance. And to be able to do that, you have to learn as much as you possibly can about your thyroid.

(Incidentally, the incredibly stupid GP that kept my TSH at 9, because 'that is near enough', told me my symptoms must be due to something else. I asked 'like what?' He shrugged his shoulders, looked complacent and said 'how should I know?' I said, 'well, you're supposed to be the doctor, so bloody-well find out, then!' Sometimes you have to show them who's boss. :) )

JoJoloveschocolate profile image
JoJoloveschocolate in reply to greygoose

“When there's not enough to go round, the body has to - unconsciously - 'make a choice' about which cells get how much.”

so, stupid question, is it possible that the low T3 is shared to different areas at different times…what I mean is (not explaining it very well) but - my symptoms seem to move from one part of the body to another. For instance I had a few days of bloating and stomach pain, then that settled and I had a few days of sciatica-like pain down the sides of my thighs, then I had back pain and pain in my finger joints…etc etc and so it goes on in a weird kind of see-sawing carousel of symptoms. Very strange. I do take over the counter meds for pain, constipation, trapped wind, bloating, though so maybe it’s those products that briefly get on top of each issue for a while.

Thank you for your reassurance about the prospect of being over medicated. The Gp made me feel like I would probably burst into flames at some point…spontaneous combustion brought on by my own greed for an extra 25mcg of the devil’s drug 🤣. I have been sitting here worrying about the next test - what if it shows even lower tsh and a t4 that’s hardly moved? Who knows what will happen? I think I’ll just have to shelve that worry.

TSH of 9…”near enough”…? Makes me feel ill just thinking about that…

Thanks for all your advice and info x

greygoose profile image
greygoose in reply to JoJoloveschocolate

is it possible that the low T3 is shared to different areas at different times

I'm afraid I can't answer that question, but I wouldn't have thought so.

Doctors do seem to like putting the fear of god into people. But, when pressed, they don't have any answers. For example, ask them why a TSH below range is so 'dangerous', and they change the subject! The thing is not to give them the reaction they appear to be after. 'No, mate, you don't scare me with your dire warnings. If it were true that suppressed TSH is dangerous, you would tell me calmly and explain why. You're just sensation-seeking at my expense!' Always call their bluff. :)

JoJoloveschocolate profile image
JoJoloveschocolate in reply to greygoose

That’s what he did to me - kept going on about my low/normal tsh and the possibility of being over-medicated. I then used the “still room in the range for a small increase” that someone had said on here to help get an increase. He shook his head….and ummed and ahhhed and oooed…sighed. I said well if that will be a problem because of the blood results I’m happy for you to refer me. Then he said …Oh, no no, I didn’t say I wouldn’t do it…” Bloody hell, mate! Just crack-on with it then! They speak in riddles. It’s like some kind of quest!

greygoose profile image
greygoose in reply to JoJoloveschocolate

Sounds like he knows he's out of his depth. He would have liked you to just take his word for the undesirablity of a low TSH and left it at that. Asking questions and giving him facts sent him into a tail-spin. So, it obviously works! lol

JoJoloveschocolate profile image
JoJoloveschocolate in reply to greygoose

lol…He seemed a bit put-out, that’s what made me think he might start trying to label me with depression…or his Other-something else-totally non-thyroid-mystery-puttwoandtwotogethertomakefive-kind of-itis. Blimey, even our vet said if you hear the sound of hooves outside the window - think horses, not zebras!

MissGrace profile image
MissGrace

I know it isn’t always possible, but if you can, take someone with you if you see this tosser again - sometimes an observer can ensure they make less tossy comments. Especially if they take a pen and notepad in and write them down! Wish I could come with you, I really do. 🤸🏿‍♀️🥛

JoJoloveschocolate profile image
JoJoloveschocolate in reply to MissGrace

Hehe! Oh thank you. I wish you could come with me. Someone else on here suggested taking someone. I couldn’t take my husband with me this time, but will next time. I told him what happened and he was shocked at how it all went. At least I have the increase now. Just dreading the next blood tests results in 8 weeks. That will probably end up in another exhausting appointment! x

humanbean profile image
humanbean

For anyone mentioning mouth ulcers

JoJoloveschocolate SovietSong

I have had a long and painful history with them, and it has been particularly bad since I gave up smoking 14 years ago.

I feel I might jinx myself saying this but I have found a combination of things that seems to be keeping them down, and also smaller and less painful when they do turn up.

These are the things I'm using :

Toothpaste (fluoride free, mint or fennel flavour, and doesn't contain sodium lauryl sulfate) :

kingfishertoothpaste.co.uk/...

I buy the toothpaste from Holland & Barrett.

Mouthwash : I buy from Superdrug, peppermint or "original" flavour. I use it after using the toothpaste.

superdrug.com/health/mouth-...

superdrug.com/health/mouth-...

Ulcer treatment : Bee Health Propolis treatment

amazon.co.uk/dp/B00URR7N2O

The above is a recent discovery and it helps me a lot. I use it after using the mouthwash.

...

As a general rule for oral health, good levels of B vitamins are recommended. I always use Thorne Basic B, plus methylfolate plus methylcobalamin.

I avoid folic acid and cyanocobalamin like the plague.

JoJoloveschocolate profile image
JoJoloveschocolate in reply to humanbean

Thank you so much for the info and recommendations. I really like the sound of the fennel flavour toothpaste. I used to smoke and when I gave up everything seemed to get worse with my health! I can’t stand the smell of cigarettes now and wouldn’t ever start again, but it did seem to suppress a lot of underlying health issues at the time, very strange.

TiggerMe profile image
TiggerMe in reply to humanbean

Hi Bean, have you ever checked your zinc levels as mouth sores/ ulcers etc are one of the signs of low zinc.... I'm thinking zinc is one of the many things contained in nicotine?

humanbean profile image
humanbean in reply to TiggerMe

Yes, I've tested my zinc. It was well in range and I also supplement zinc about four times a week.

Jaydee1507 profile image
Jaydee1507Administrator in reply to humanbean

That looks like a great toothpaste and not too expensive. I've just switched to a fluoride free 'natural' toothpaste but had to look long and hard to find even one of those that didn't contain citric acid or xanthan gum.

I'm keeping everything crossed that the lack of fluoride doesn't make my teeth crumble as they are very delicate indeed!

humanbean profile image
humanbean in reply to Jaydee1507

The same company does produce toothpastes containing fluoride, if you'd prefer that.

humanbean profile image
humanbean

I sat there confused and wondering which road he was prepared to go down because he wasn’t keen on increasing my dose at all as he said my last tsh was 1.9 “normal” and he said he doesn’t want to overmedicate me and the drop in t4 from 11.4 to 9.8 wasn’t a significant drop.

Some links you might find helpful :

healthunlocked.com/thyroidu...

web.archive.org/web/2004060...

healthunlocked.com/thyroidu...

JoJoloveschocolate profile image
JoJoloveschocolate in reply to humanbean

Thank you! I will have a good read through this afternoon. x

humanbean profile image
humanbean

One final comment...

Sometimes my gums used to bleed. I found that taking vitamin C regularly would stop this.

JoJoloveschocolate profile image
JoJoloveschocolate in reply to humanbean

Oh, I’ve had this too! It used to happen all the time. I started using interdental brushes and it seems to have settled down again now. I went to the dentist the other day for a check up and he said everything looked pretty good. I’ll get some vitamin C. Thanks again.

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