So, it took a total of 3 weeks to get my medication dose changed recently. In that time, my symptoms came back as it was not controlled on the dose I was on. Shock. Not impressed.
One of the symptoms I got this time though was a ridiculously dry mouth. It was so uncomfortable and nothing was helping it feel better. This has now developed into what I think is oral thrush although I’ll be ringing the GP tomorrow to check. White and red patches, sore throat, lips, tongue, gums, mouth ulcers…. You name it, I have it. I’m struggling to eat or drink at the moment due to either pain, stinging or physically being unable to move it round in my mouth. Anyone had this who has found something to help (on a Sunday 😩). I’m starving but options are limited as to what I can manage.
If anyone has any reading on hyperthyroidism and oral thrush (if that is what it is) I’d be grateful!
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Carebear92
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I’m still under investigation so no Graves diagnosis as of yet. I am on PTU, changed over a few months ago from Carbimazole.
I’m not feeling unwell as such, just tired but we have just come back from holiday with a toddler so I put it down to that 😂 plus, as you said, I’m not eating anywhere near as much as usual and I also can’t tolerate hot drinks so coffee consumption is vastly reduced!
Thanks for your advice, I’ll give 111 a call. I wasn’t sure if calling them was unnecessary. Last time I suspected the low WBC it turned out to be covid so assumed I was out of the woods after that
The first few months resuming or changing type of antithyroid are when we seem to be at highest risk - but its remains throughout the time we are treated.
Are your levels well controlled? Im thinking not if you had to switch? Or perhaps you have issues with carbimazole?
I’m just wondering if you thyroid levels are still high?
When my thyroid levels were high it caused the blood glucose levels to be high. I was diagnosed type 2 within a year of hyperthyroid diagnosis.
So oral thrush is very common with high glucose. Have you had a HBA1c test which gives an indication of sugar control over past few months.
Levels are really not controlled at all at the moment, it’s been immensely frustrating trying to get people to understand that I’m not being overly dramatic about prompt treatment tbh, but that’s a different story.
My levels are still high. They raised out of the labs range at the end of September which was 4 weeks after the change to PTU and then it took 3 weeks after that for anyone to advise of the dosage change so I knew I was screwed.
I haven’t had the HBa1C recently, I do have a f/u with endo on Tuesday though so I will discuss that with them then.
This has been really helpful, thank you. OOH GP is contacting me within the next hour! Can’t believe I forgot about the sore throat thing this has been going on for a few weeks now 🤦🏻♀️
Hope doctor helps. Sorting out a FBC is now urgent, as it sounds like this has been developing for a while.
Do you have manufacturers patient information leaflet (PIL)? pharmacists are obligated to provide. It will state side affects & you can emphasise the warning to doctor as they often don’t know about them.
It’s shocking how “left to it” doctors leave you, I found GP passed everything to specialist - specialist said everything unrelated go back to GP. This leaves important aspects delayed being investigated.
I’m now organised enough now to chase up when test due. Have online access to results & am knowledgeable enough to tweak my carbimazole dose & confident enough to convince Dr I know best.
When your sorted & feeling better come back with results so we can advise further.
Do you have access to results or printed copies (with ranges) Post funtion, nutrients & antibodies results.
What is your current PTU dose?
Is a repeat test arranged for 6 weeks after dose? This is important as dose often needs adjusting.
Yes, I have it somewhere, I’m sure! They were pretty hot on it last time I had the sore throat but it was like 2 days on Carbimazole and turned out to be covid but I was so so poorly! Yeah, I completely agree! And trying to convince the gatekeeping type of admin staff that actually, no I can’t go 4-5 days without the medication and no it isn’t my fault I’ve run out is just irritating! I have patient access to my results as I’ve gone a long long time with being fobbed off for various reasons so I like to keep tabs. I am not confident enough to tweak my dose myself yet, but I hope I will be. So important to be able to advocate for yourself. I’m on 50mg BD of PTU at the moment which has been doubled from OD. I knew I was on too low a dose as I had been on 40mg Carbimazole and it was working well but endo had already said PTU was far less potent. I have all my results. I keep asking them for TRab antibodies but they just keep repeating TPO. Endo has requested TRab too and they still aren’t doing it for some reason. I have one booked for 4 weeks post dosage change and then another 4 weeks after that. I’m going to request more than just TFT next time as that’s all they’ve repeated recently and I think I need nutrients/FBC repeating
If you have brand name & dose you can likely look up PIL online.
PTU & Carbimazole work a slightly differently - PTU has more impact on FT4:FT3 conversion.
Comparing mg to mg for carbimazole / PTU, then PTU is far less potent.
Which it why usual starting doses are higher eg PTU 300-450 mg per day, divided 8 / 24hr gaps [3x daily] 900mg maximum.
For carbimazole starting on a dose of 15-40 mg daily, taken divided into 2-3 doses a day. (Maximum up 60mg)
So from 40mg carbimazole to 50mg x2 daily PTU would represent a drop in anti thyroid action.
Are your TPOab positive? Often shown as weakly elevated with Graves.
Higher elevations are present with autoimmune thyroiditis (Hashimoto’s)
TRab or TSI is acceptable evidence of Graves.
I was negative for autoimmune so had a ultrasound & uptake CT of thyroid. This confirmed a hot (or toxic) nodule. Showing a focused area of hyper functioning thyroid.
You have been hyper for over 4 months so would be unusual if Hashimoto’s but not impossible.
Your previous posts show suspected hypothyroid 1 year ago then diagnosed hyper 5 months ago.
However TSH can remain low long ofter FT4 & FT3 drop. Are your symptoms & results definitely showing above range thyroid levels. My TSH stayed undetectable (7 years in total) even when FT4 / FT3 very low or under range.
So my results have been: TSH (0.35-5.5) 0.99 Aug 21. This dropped to <0.02 (same range) when tested in May 22 and has stayed at this level since the . FT4 (7.86-14.41) 11.2 Aug 21, 72.1 May 22, 63.4 (f/u), 18.3 Jul 22 (4 weeks after carbimazole 40mg), 11.6 Jul 22 (4 weeks after carbimazole 20mg), 15.5 Sept 22 (4 weeks after PTU 50mg). Only had one FT3 test (3.8-6) 6.2 Jul 22. TPO (0.1-9) results remained at 1.0 May to Sept. I have had various autoimmune tests through rheumatology I’m waiting for results as I have hypermobility spectrum disorder. The suspected hypo was eventually diagnosed as ME/CFS and HSD, and I’m undergoing further tests surrounding these issues too. I’m supposed to be getting an US on my thyroid but heard nothing about it yet
want to make sure when your FT4 results of 63.4 fit in?
If you write the change of medication between results it will help keep track of what’s happening.
Aug 21
TSH 0.99 (0.35-5.5)
FT4 11.2 (7.86-14.41) (47%)
May 22
TSH <0.02 (0.35-5.5)
FT4 72.1 (7.86-14.41) (980%)
Later in May 22?
TSH <0.02 (0.35-5.5)
FT4 63.4 (7.86-14.41) (847%)
July 22
TSH <0.02 (0.35-5.5)
FT4 11.6 (7.86-14.41) (57%)
FT3 6.2 (3.8-6) (109%)
September 22
TSH <0.02 (0.35-5.5)
FT4 15.5 (7.86-14.41) (116%)
Your results in 21 indicates normal function but by May 22 your FT4 was the highest Ive ever seen on forum - I image you were very unwell?
Many say FT3 represent the main gauge of symptoms, as not tested it’s possible they were not as severe level. if they were equally high eg 9x the normal range - you must have been seriously & dangerously Ill.
By July 22 your FT4 was back in range but your FT3 was disproportionately higher.
If FT3 had been monitored throughout we could say if this was a trend or a one off variation. When either FT4 or FT3 is very different getting them balanced can be difficult.
An ultrasound will give more information and will show health & size of thyroid and detect any nodules. The limitation is that it doesn’t conclusively show the function level throughout thyroid. Iodine uptake scan might be arranged if nodules detected to see of they are over producing.
That’s all correct. I was very very unwell. I was sent to A&E and they missed the result, discharged with no treatment and said all was fine. So not knowing the result meant that I became extremely unwell but fortunately my GP spotted it and referred me straight away. I have only had that one FT3 test and it wasn’t specifically requested so it’s unfortunate that I don’t have the May 22 result.
I have no swelling or anything but the endo did say that he didn’t suspect autoimmune disease and it’s likely the result of thyroiditis. I’m not sure I’ve had anything happen that would mean it suddenly shot up like that though!
Nutrients all seem fine from what I can see. A few abnormal results here and there but nothing that has required follow up so far.
I’m not on any other medication, just take supplements like vitD, evening primrose and magnesium
That’s crazy the hospital said you were fine! Yourheart rate must have been fast?
Swellings aren’t always obvious - 2 doctors had said my neck was “fine”. Then at a third appointment - I took a bottle of water & asked the nurse to look at neck when drinking. It was quite obvious there was an issue with a noticeable enlargement to left side. It wasn’t noticeable unless looking for it. She arranged bloods & ultrasound.
The nodule was measured on ultrasound at over >5cm. the team did a FNA which was clear. Function was apparently tested & I was told fine but found out later it hadn’t been processed. Hospital had tested years before & missed abnormal levels - so this happens often.
One of reason we have to track & monitor our own results, & sometime arrange our own complete testing.
Usually viral or subacute thyroiditis often causes swelling & can be painful, it’s usually triggered by a separate illness. Covid seems to start off thyroid problems, if it’s possible you had that? This include triggering autoimmune too.
It was, it was 132 when I was with the GP, spiking to 150+ after some simple tasks which is why she wanted me seen. I was exhausted. Still waiting for a response about my complaint. Fortunately I have some wonderful GP’s at my practice.
That’s good to know if I ever get an appointment for a scan 😂 it’s shocking how it’s missed so often!
I’ve only had covid once and it was after I had started treatment, weirdly! Will have to wait and see
I’ve just seen OOH GP and I’ve left the appointment raging at how awful it was. I can’t tell whether he was actually trying to be helpful or not. It doesn’t feel like he was at all.
Nope, no blood test, he said I would have to go to a&e for one but the wait is currently 10 hours, so I might as well wait and call my GP tomorrow. He shut me down when I asked about thrush and said it wasn’t but took a swab for strep throat and wrote fungal studies on the form in a frustrated manner when I asked. Prescribed antibiotics but actually said he wouldn’t personally take them. Advised difflam spray for my throat when I said multiple times that my mouth and tongue were most painful and disruptive and that the stinging would “only be temporary”. Told me stronger painkillers would only make me “drowsy” (I have endometriosis… I’m aware 😂). Just a complete waste of time tbh, I’m no better off now for having been so will just have to call my GP tomorrow and probably end up in AMU again 😩
Exactly, I am no clearer than if I’d have stayed at home and waited until tomorrow. He said nothing about my medication apart from ask if I declared it on my travel insurance while I was away last week?! 🥴
He said if I feel more unwell, disregard everything he’s said and go to a&e.
Do you have any temperature? If unsure go to A&E, say you feel worse since visiting on call doctor earlier. I think anyone would feel worse after visiting such a doctor.
What it is his business what your travel insurance arrangements were (as in what they were in the past)
My instincts are saying it’s not an infection as such as I don’t have a temperature and the only symptoms I have are localised. I’d much rather be at home and just get bloods done tomorrow. My usual GP isn’t in tomorrow but they’re all much more helpful at my surgery, I will only feel worse sat in A&E and I wouldn’t trust their advice now anyway. He has made me feel worse but more like I just want to be at home rather than feeling like things are more urgent.
He gave me a bit of a lecture about getting things sorted earlier but I was in Cyprus for the past week so 🤷🏻♀️
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