I've now received my endocrinologist appointment, it appears to be at the RVI Newcastle on April 2nd 9.20am..one problem, I can't get there for 9.20am🤦♀️ I have to catch a taxi to train station, then the first train from my end to Newcastle, then a taxi to the RVI... Then do it all again to go back home.
I'm going to ring to ask for a later appointment, but hoping this doesn't result in it being put back 😡
Also.. There is no mention of the endocrinologist I'm seeing, and there are two I definitely don't want to see who work out of Newcastle.
I was told by my gp I could vet the endocrinologist, just in case I'd seen them before, and was not happy about the way the appointment went , as I said, this applied to two I saw and would definitely not want to see them again.
More ringing around today to try to change the appointment and see who I'm seeing 🤦♀️.
I'm really anxious about this appointment, as through experience with endocrinologists they as we on here know, don't know much about thyroid illnesse, although I will be trying to explain what the medication is doing to my gut, and other side effects I'm having to both T4, T3.
I can't come away from this appointment with the same as every other appointment, just suck it up and take the thyroid medication, even if you've been told by an endocrinologist you have an intolorance to it.
I'm obviously armed with photographic evidence of what I'm passing, and the rash on my for arms.
Also due to the endo stopping my T3, and the gp sending the wrong thyroid medication to the chemist I was not taking anything for around 5 days, and as I said I felt great all side effects went.
I introduced some T4 thyroid medication (teva) on Saturday it's Tuesday today, woke with my first bad headache, metallic taste in mouth🤢 feel sicky like morning sickness.
Passed a mushy stool yesterday, with a stomach ache, it's starting again, it usually takes around 2/3 days to show if I'm going to have problems with the thyroid medication, and I've not even taken the whole amount yet 50mg prescribed, I've started on splitting the 25mg tablets in to half, 4 wks time I've got a blood test booked😔
I Trully can't see me stomaching 50mg.
Teva was so bad the last time I was on it, I mentioned this to my gp, but that as gone over her head, I know I could seek my own off roseway, but that will defeat seeing the endocrinologist, I need them to give me something that doesn't flare up my colitis, I can't afford to pay for my thyroid medication.
And I don't want to suffer like this either on teva, how can I get the gp to prescribed something else 🤦♀️
I'm loosing the will to live, I felt great for 5 days off this awful synthetic drug, but know that won't last (no thyroid) and staying off it until April seems scary, also my blood work would reflect this, and if I say I haven't taken any thyroid medication, I can just imagine the endocrinologist telling me its my own fault for not taking it that's why you feel so ill, not addressing the gut issues.
Any advice welcome ❤️
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birkie
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Honestly it's not that easy.. Wish it was, I've now got to try to speek to this gp, again! And trying to do that is hell through my surgery, it's taken me over 3 wks to get a message to her about the endocrinologist appointment 🤦♀️ and I'm going to have to go through the receptionists, who am afraid to say are like jobs worths😔.But needs must😞 I'm just so sick of how many hurdles I have to jump through just to speak to the gp😡😡😡
You know I've been sitting here dreading taking the next dose of T4 teva.. Thinking.. the flipping endo put in her own report.. This lady is intolorent to both T4, T3...then she prescribes T4 teva knowing I can't tolerate it😔The analogy is like giving a tablet to a patient who as a nut allergy a tablet containing nuts... They just wouldn't even consider doing it and would look for an alternative.
There have been fights in my life where the vacuum created by the lack of response and silence and stonewalling is absolutely crazy making... gets you so hot and emotional. Even when you get what you want, it makes you feel terrible for having had to fight so hard.
It's just terrible that there are so many hurdles. And it's just terrible that all those people who are "just doing their jobs" are creating so much hurt and pain. I am praying and wishing that you have a breakthrough!
Really wouldn't be able to afford that, it's a taxi to train station from where I live £12, train to carslile £30 return, then the train to Newcastle return, no clue how much that is now, then do it all coming back and a hotel on top..😬.But just got off the phone with my son, he's told me to leave it as it is, as he thinks he may be able to drive me there, still working out if he can get time off to do it🤞
birkie do you know why you were referred to the RVI? You know and I know of issues there. How about Gateshead QE hospital. I think the waiting list is shorter there and it’s at least geographically, away from the RVI and The Freeman. I live in Newcastle and I plan to go to the QE after I get my cardio appointment. I will never go to the RVI or the endo department in The Freeman either.
Other than that, you guys over near Carlisle, is Newcastle really your nearest ‘expert’?
If you are on benefits of any kind, you used to be able to claim travelling expenses. That distance is surely cruel and unusual for you, especially as you feel so unwell.
We have a charity here in Newcastle set up to drive unwell patients to and from hospital (I think it’s cancer patients only) and I can never understand why it’s necessary, as the NHS offers ambulance pick ups. I suspect ‘Daft as a Brush’ is probably kinder and more considerate and timely.
I don't know if you saw my earlier posts about the endocrinologist appointment I had with the endo at West Cumberland hospital, she refused to deal with me, and requested my gp send me to another endocrinologist out of my area.
This appointment as just landed, and to boot it doesn't even tell me who the endocrinologist is that I'm seeing.
I spoke to an endocrinologist who works out of Newcastle but about primary hyperparathyroidism, he also dismissed me, saying I'd do better if I come off T3... That had nothing to do with primary hyperparathyroidism, that was thyroid 🙄
I saw an endocrinologist at Hexham in around 2021, he was also usless, but that was about my primary hyperparathyroidism also, he told me I didn't have it🙄 well I do!! I got my diagnosis through Liverpool this year.
I think it's just who the gp pushes you off to, she did say it might be Newcastle, I'm in to minds now as to whether I want to deal with Newcastle.
As for carslile I alway seem to get this endocrinologist who as now said she doesn't want to deal with me.
I have loads of travel stubbs ect, but can only claim for the train or petrol, not taxis, there are not public transport 🤷♀️ I'm keeping them to claim them all together, because I've done a lot of travelling back and forth to carslile, Liverpool and now Newcastle if I attend, I asked about transport and as you said its only for cancer patients and elderly people.
birkie honestly, I can’t guarantee that any endo will be able to deal with your issues (or mine). Crikey they can’t deal with simple issues. However you know the reputation of our head honcho here and I think ‘he who must be obeyed’ strongly influences everybody on the ‘team’. Strictly speaking the QE in Gateshead comes under his remit too but the ‘culture’ seems quite different. Think about it. Ideally you don’t want to be wasting your time and money etc OR putting your blood pressure up unnecessarily! Good luck my dear.
Yeah, it's going to be bad enough travelling to Newcastle, but to be told we can't do anything or just stuck it up on T4 would be soul destroying.There must be something they can do, they can't leave me on thyroid medication that Im having intolorances to, it makes no sense, I'm not absorbing it correctly, and when Ive been on T4 it tanks my T3.
I can bet in 4 wks time when I get my bloods done my T3 is on the floor, and I'm half dead, I'm back on my way to that now!
I really dont want to take anymore of this thyroid medication, and it's not like I've only given it a couple of months, it's been 4 years 😳.
Been on the Newcastle RIV endocrinologist team to see who is resident, it just mentions Mr ramsgate and Mr truran.
I have checked, it’s not that easy finding who is who, from the web at the RVI. Both these guys you mention are surgeons. Are you being sent with a view to surgery? Or is it that these are just the two you could find? It’s an odd arrangement here in Newcastle. Endocrinologists (at least Prof Pearce) seems to work out of both major hospitals, the RVI and The Freeman, as well as allegedly doing research under the auspices of Newcastle University.
By the sounds of what you say, you are looking for a suitable medication (aren’t we all) which would be a consultation with a Doctor or sometimes Professor title.
This main man here allows no truck with anything other than levothyroxine for treatment of hypothyroidism, as far as I can see. His ‘team’ and the local GPs are under his influence and nobody medical seems to be raising their head above the parapet to say otherwise. He is creating a sort of ‘black hole’ for patients. Not just here in Newcastle but his influence is over the whole of the UK.
I don’t know your history. I should have read you bio but as I am not optimally medicated myself, I tend not to answer those type of posts (blood tests and dosage etc) otherwise I get my ‘knickers in a knot’. I do know you have been having a particularly hard time. I take it you have seen a gastro specialist to look for reasons you react so badly to thyroid hormones? Or am I being naive. I know it’s been a hugely long wrong road for so many of us.
I just worry for us all over the country with this ‘embargo’ going on, for example about re:T3. How are doctors ever to find out how it works etc to give proper advice, if research is not allowed because of a blanket ban on T3, T3 testing, T3 dosing?
I hate to think of you coming to this area to be further disappointed. However, what are our options? Limited in the extreme.
Goodness mine is a long story...🤦♀️Hospitalised in 2015, rectal bleeding, vomiting blood.. 12 days in hospital and gastro eventually diagnosis me with colitis and lactose intolorent .
I do a 12 month food diary of all food that sets me off, go dairy free and change to lactose free milk, we're doing great gut wise until I eventually get diagnosed with hyperthyroidism, gp prescribes anti thyroid drug and within 3 days I know something as flared up the colitis, I look back to see if its something I've eaten, not even thinking about the anti thyroid medication 🤦♀️ anyway I eventually recognise its the only thing that's gone in my body that's different from my normal diet.
I try to carry on but just become worse until the diarrhea, cramps, inflammation starts, I inform gp who just tells me to persist with them as the side effects will go.
They don't, they just become worse, so now I'm vomiting it back, I continue on just vomiting, and diarrhea, I call gp again and he says he will give me PTU... It takes him over a fortnight to prescribe it to me, go on it with little change, and now I'm going into thyroid crisis because I can't keep the drug in my stomach.
GP not interested, and didn't perform any bloods when I was on the anti thyroid, first bloods taken were in Feb 2019 in hospital in thyroid crisis , I was diagnosed with hyperthyroidism in Sep 2018.
I've got to say there are many sceptics within the NHS😡 I was in and out of consciousness on admission to hospital, when I was able, the doctor gave me 6 little white tablets told to take them immediately, I did, and within minutes I vomited and soiled the bed.
I asked WHAT were those tablets.. "PTU anti thyroid medication, you've been very silly in not taking them haven't you"
Well eventho I was very ill you can imagine my response to this doctor, who at first didn't believe me, but when I showed him my abdomen he rushed me down for a bowle scan, everything showed server inflammation in both small and large intestines, he reluctantly kept me off the anti thyroid medication and put me on steroids then 6 days later when I told him my abdomen was now feeling better, no diarrhea or vomiting he did another bowel scan, everything was back to normal and he agreed I must have a bad reaction to these meds.
See endocrinologist, who totally dismisses the theory the gp as put in the report, he told me he as never known any patient who can't take anti thyroid medication 🤦♀️(utter liar).
He eventually changes his mind when he sees my bowle scan, but says its likely I have lymphoma of the bowle, and that is why I can't stomach it.. He tells me this when I'm on my own no body is with me and no colonoscopy done😡.
I go back to my hospital bed thinking I've got bowle cancer
I have colonoscopy... No cancer... I have uptake scan, it takes up in both lobes no other intervention but total thyroidectomy as I'm now thyrotoxicosis.
No more anti thyroid medication and my bowles are fine, get thyroid removed get T4 and the 💩 hits the fan quite literally AGAIN! and it's been like that now for 4 years😔 sheer hell😔
One thing I remember before going under the knife was the surgeon asking me if I had any questions, I said yes "what happens when you remove my whole thyroid?
" ho you take T4 levothyroxin, you'll never look back "
I said.." there's the problem because I have a very sensitive stomach to synthetic medication (mentioned the anti thyroid fiasco) he just said he knows of no one who can't take thyroid medication 🤦♀️
So that's my story, long as it is😔
There are plenty of meds I can't take, aspirin, ibuprofen, antibiotics, anti thyroid (both)
I've been on the T4 (levothyroxin) since Sunday and I've not even got to the full dose yet (50mg) and I'm typing this with cramping pain in the right side of my bowles, with awful gurgling, bubbling noises, had 3 mushy stools yesterday, and it will only become worse the more I increase, if I keep taking these meds😔😔
Yes those men at Newcastle are surgeons, Mr truran did my mates parathyroidectmy, but no endocrinologist is mentioned on the site🤷♀️
I'm going to speak with my gp, if I can! and ask to be sent to somewhere else.... Ho and it might change when they see my bloods in 4 wks.. Because my TSH was 11.59 on the last draw some months ago, can't see that it would have improved with no meds for 5 days then a small dose of T4 at 12.5, that I'm trying to stomach now... Hope my gp 💩 herself when she sees them.... Well one can only hope 🤭
birdie I wrote a huge response to you, ran out of juice on the iPad and lost it when plugging it in. I won’t try to repeat everything I said. It was a long read!
I will précis here instead.
It’s unlikely you will be absorbing any of your thyroid hormones. Your ‘inflammatory’ processes are working overtime. It might be better to stop them altogether since they are properly jeopardising your day to day health.
Wondering if an immunologist might be a better bet for you than an endo at the moment. You need to get a handle on this overworking inflammatory process.
I hope one of the experienced ‘hands’ will comment on this because obviously (as often discussed on the forum) stopping thyroid medication is not considered a good idea!
You have until April to try another way to deal with this. I think it’s worth a try looking at it from another angle.
Yes I had an inflammatory response in my lymph nodes, saliva glands, and tonsils, specialist said I have inflammation somewhere in my body.GP as sorted gastro.. But it's a phone appointment 🤦♀️
I'm waiting on her seeing me, to examine my joints for RA before she sends me to rheumatologist.
I've already had graves which was auto immune, but surgeon told me the graves anti bodies don't last more than 3/6 months after TT.
I've since found out this is not true, as your anti bodies don't just attack your thyroid they can attack any part of your body ,and you can have more than one auto immune illness.
Also I have a mass of (14 x 7 x 21mm thyroid tissue after FNA) on the right side above the thyroid bed and the thyroglossal tract.
The specialist in Liverpool told me because I had graves thyrotoxicosis all thyroid tissue should have been removed, and on a US scan done on Nov 20th 2022 there was no mass of (14 x 7 x 21) so the specialist thinks this mass as grown since 2022.
I've spoken to her on the matter, it was her who said I need to see an endocrinologist.But she only wants to deal with my primary hyperparathyroidism, she doesn't want to mix the two.
Plus she's very busy, I'm waiting on a 4D ct scan in Liverpool in feb👍
Hello Birkie. I’m relatively new to this forum and tend to read more than post but not new to living without a thyroid. I’m also from Cumbria.
I’m sorry you are having so many problems. I also couldn’t tolerate anti thyroid meds, Nine years ago I went to the GP complaining of menopause symptoms and was tested for thyroid and told I had sub clinical hyperthyroidism. I was given carbimazole and after a month ended up in A&E with pneumonia. I had a very rare known reaction to the anti thyroid medication which had wiped out my neutrophils. Since both types of anti thyroid meds had this rare side effect I was told that a thyroidectomy was the best option. It was all very rushed and I was in and out of hospital and totally naive about anything thyroid.
If it’s any consolation it’s been eight years since my thyroidectomy and I’m still trying to get my dose at the correct level for me!
I’m afraid that without a thyroid you will need to take the medication. Bear with me as I know you won’t want to hear that. Currently in the UK Levothyroxine (T4) is the main treatment. The only other option is a combination T4/T3 or T3 only but it’s not easy to get T3 on the NHS so you were lucky to get it. My request for a combination trial to the endocrinologist I spoke to was never progressed!
This is my experience. When I was on 75mcg levo I had bad diarrhoea, loose stools (probably not as bad as yours but still not much fun). I found out that I was very low in vitamin D, low enough to be prescribed it by gp. However I couldn’t tolerate the tablets as they gave me atrial fibrillation every time I ate anything. I was advised to try a ‘maintenance dose’ of 1000IU a day and just find a brand I could tolerate. Like many on here I use the Better You mouth spray and have found it has done wonders for the diarrhoea etc. Vit D seems to help with stomach problems as it helps regulate calcium production and reduces inflammation.
I am currently increasing my Levothyroxine dose (as I had other symptoms on 75mcg) and still take the vitamin D even though my levels have crept back into range. I found that getting my vitamin D levels better helped with certain symptoms and increasing my Levothyroxine dose seems to be helping with others. So, for me, I needed both increasing.
Low vitamin D is associated with hypothyroidism so I would recommend you ask gp for a vitamin D and also a B12 test. You can get B12 mouth spray too if you need it (see other posts on here about low vitamins). The advantage of mouth sprays is that they avoid the stomach so that avoids a lot of problems.
The other problem is that when your Levothyroxine dose is too low and the body doesn’t have enough it sends it to the organs that need it the most (heart and brain) so the stomach loses out and this means we end up with stomach problems or existing problems become worse.
Levothyroxine is also know to increase blood sugar (someone correct me if I’ve got this wrong) which also doesn’t help with stomach issues so you may find you need to tweak your diet. I have to be more careful re what I eat now.
I would recommend that you find out what dose the doctor recommends you start at and take it as prescribed (at the same time every day). Whenever I change doses, like others on here, I always get side effects. It takes six weeks for the dose to get into the blood stream and then I’ve found it takes about 3 to 6 months for everything to settle down. Unfortunately it’s not much fun during the process and it’s slow but hopefully one feels a bit better at the end of it 🤞
I also recommend sticking with the same brand of Levothyroxine every time. My tummy didn’t like TEVA so I’ve settled on accord, You just need to ask your gp to specific the brand on your prescription.
The other thing that I’ve found is that whenever one mentions a symptom that falls into the hyperthyroidism list of symptoms the doctors assume you are on too much medication and reduce your dose. This could explain why your T3 was withdrawn as loose stools are associated with being overactive. However, as I and others on here have found symptoms don’t fall as neatly into hypo and hyper as the literature suggests.
Sorry for a long post but hope some of it may be helpful. Good luck with endo appointment.
I actually took the vitamin D because it was low due to primary hyperparathyroidism, I could not stomach the vit D given by my gp.. brilliant blue and the yellow one🤢I purchased the better you with k.. Sprayed as instructed but I was worse but persisted until I could no longer stand it, I was just passing the thyroid drug and vid d through my bowles.
I looked on the back of the spray and was horrified to see it say... Can cause a laxative effect.. It did, as soon as I stopped it the gut just went back to what it's like on the thyroid medication.
This is my 3rd time on teva (lactose free) .. I have colitis and are lactose intolorent, I alway follow protocols in taking the thyroid medication, and don't mix it.
I did a 12 month food diary, I eliminate dairy I have lactose free milk and I got it under control.... Until I was given the anti thyroid medication and it flared up the colitis, just like the thyroid medication is😔
If the endo thinks I was over medicated she just had to look at my blood work, last TSH.. 11.59.
My report said.. Hypothyroid again see endocrinologist 🤦♀️
I would think both thyroid medications would work if I could keep them in my gut, I was the same, I couldn't stomach anti thyroid medication either, I went into thyroid storm because I couldn't keep it in my gut.
I’m sorry you were unable to cope with the better you D3. I actually take the plain vit D without K as the K seemed to exacerbate the heart problems for me. It also took a week before I noticed any effect and a month or so to make a real difference.
TEVA contains mannitol which according to internet is also a laxative. Some people react badly to the mannitol.
I’m going to try and pin a post in here which contains a table part way down that shows the additives to all the different brands of levo., and which contain lactose. If it doesn’t work type ‘ lactose free Levothyroxine’ into the search box,
There is one called Aristo / Vencamil which may help if you can get it. It doesn’t appear to contain lactose or mannitol. Apologies if I’m repeating what’s been suggested already.
I do sympathise with you. It’s really not much fun when medications that are meant to help cause problems. Thyroid hormones do have a direct affect on the gut (they change the ways the muscles contract).
I’m not a doctor but from my own experience I’ve found that thyroid issues are complex especially when you have other things going on, and have found it’s a question of trying to unravel one’s symptoms and working out which symptoms belong to which things. I’ve also found that how we present symptoms to the endocrinologist makes a difference. Work out what you want to say, write it down and stick to it. Don’t expect them to have read your notes beforehand. Remember they are focused on one speciality and are working fast, so if you say loose stools their minds will go ‘overactive’ /‘too much medication’ without even looking at any test results or initially considering other issues.
Maybe when you speak with the endo stress that you have colitis and that you feel that the thyroid medication, which you need to survive, is making the colitis flare up and the flare up symptoms are loose stools, sickness etc, which is greatly affecting your quality of life, and that you need help with the colitis in order to be able to take the thyroid medication.
If you felt better on t3 say that t3 made you feel better but caused the colitis to flare up just as Levothyroxine did, and that you would prefer t3 but regardless of which they prescribe you also need something to help you control the colitis.
Don't know about that, but someone did mention a trial of T4 patches, I don't know if they are available 🤷♀️.But the endocrinologist was adamant I could only have T4 again.
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