Trying T4 again trial only🤦‍♀️

[birkie]

Hi everyone ❤️

OK I've gone back on T4 teva 50mg for a 7wk trial, "LONG STORY" after around 10 days I noticed the same symptoms occurring when I was first on T4 teva in 2019.. ( bowles making a rumbling noise, then bloating, with cramping, excessive wind, bad acid reflux and now I'm in the next phase which is server cramping bad pain causing sweating feeling sick and my bowle movements are like mud very loose my bowels are also inflamed ( I'm lactose intolerant and have colitis) Although on both occasions the T4 was lactose free I never got on with T4 so after endo saw my blood work after 5 months she put me on T3, saying it was one of 2 things either I was not converting the T4 or not absorbing, I've looked at the ingredients of this T4 teva and it contains mannitol obviously it's a filler could this be giving me these symptoms I'm having on this T4 medication, I looked at the T3 ingredients I could not see any mannitol in them and I had no bowel problems on T3 teva.. yesterday was one of my worst days I nearly soiled myself twice 🤦‍♀️the pain is now at a point I just want to come off them😢 but I've got 2 more wks before my blood tests.. THIS IS HELL!! 😭😭

[Lalatoot]

How awful, Birkie. Teva levo and the mannitol really disagree with some folks. Nothing I can suggest to help or say other than send a hug your way.

[shaws]

I am really sorry birkie that you have been disappointed and considering that it is a 'trial' it is obviously not suited to you. 50mcg isn't a high dose but as you've had bad symptoms I would try and get GP to 'trial' another levo by another pharma company as it may not have something within it that affects you so severely.

The symptoms you are also experiencing can make you very embarrassed and you will be very reluctant to leave your home. We need to be able to leave our home but you need to request another alternative to be trialled.

Phone tomorrow (or drop a note into the surgery) to let your GP know how you're body is coping and ask if you can trial an alternative make .

[birkie in reply to shaws]

Hi shaws❤️I've not felt safe to leave my home and I'm sitting as we text on my sofa (it's the nearest room to my bathroom) I'm in fear to eat anything as it comes right through me, as I said I was the same in 2019 my bloods were dire and I know it's these T4 meds, I only agreed to the trial as my gp is blaming my ongoing symptoms on T3 medication ( urinating constantly especially through night, server thirst, bone /joint pain and bone vibration I had bad constipation before I went on this T4, these symptoms are indicative of primary hyperparathyroidism for which 2 endocrinologist said I probably have (still fighting this) so because the gp and endo are positive the symptoms are T3 related I said I'd go bk on T4 for a 7wk trial.. (I'm that desperate to prove the endo and gp they are wrong as my symptoms have not gone, I've just developed the bowle/stomach problems by going bk on the T4 adding to my already bad symptoms of primary hyperparathyroidism 🤦‍♀️.. I'm hoping to go bk on T3 as I had no bowle or stomach problems on it, I do feel it was probably a way of actually getting me off T3 in the first place by saying the symptoms are T3 related 🤦‍♀️🤦‍♀️

[shaws]

Write a furious letter today to the doctor..

Also phone your GP and get a neighbour to put a letter into the surgery's letter box and tell him of the state your body is undergoing at present and he needs to take some urgent action in order to try to restore your body to 'normal' quickly.

Tell him you will have to take some professional action as your whole body feels you have been poisoned and you are thinking of putting a letter in the local newspapaer as other people may be in the same situation as yourself.

You can follow it up on Monday if he doesn't respond.

Try to relax and maybe, if possible, get a good friend/neighbour who will not talk about your condition to others to put a letter into the surgery..

I, too, had awful symptoms on T4 and they resolved when I was prescribed T3. I am aware it may be also be due to fillers/binders in tablet.

I can only function on T3. Levo made me far worse than before I diagnosed myself.

I shall cross my fingers and hope you might become like the suffragettes (nice name) in order to get prescribed what YOU the patient hopes might relieve your symptoms. Obviously the GP and the expert are not expert at all, whilst many members on this forum have had to go through similar disappointments.

Regards.

[birkie in reply to shaws]

Thanks for your responses shaws🌹

I know if I get off these T4 tablets and bk on T3 these bowle /stomach problems will go.. I feel now I just need the gp to do the bloods I know it's only been 5 wks but I can't remain on this medication any longer.. 😢

❤️❤️

[SlowDragon Administrator]

Request/insist on changing to Aristo levothyroxine

Aristo is Lactose free and no mannitol - only available as 100mcg tablets

Obviously with no thyroid 50mcg is nowhere near high enough dose anyway

Approx how much do you weigh in kilo?

If Aristo is no good

Endocrinologist must prescribe liquid levothyroxine

Why on earth are you agreeing to try Levothyroxine again anyway

[birkie in reply to SlowDragon]

Hi slowdragon 🌹

Honestly it's a fight I'm having with the endo and gp.. As you will be aware in 2020 in June and Aug I had 2 over range pth and calcium and several over range calcium in March /21/22 and calcium of 2.67 adj to 2.49 this March my calcium keeps going out of range then bk in as does my PTH.. endo wrote saying I probably have primary hyperparathiyroidism, then after struggling to get further blood tests because of covid ect I got one in sep 21 which they said was normal so the endo as now discharged me.. Its complicated I'm still fighting this... But gp and endo said my symptoms are related to my T3 meds, I told the gp I've never heard of T3 making you go to the toilet to urinate constantly, have server thirst dehydration bad bone/joint pain with vibration in large bones, constipation, vomiting, feeling of wanting to be sick, muscle spasms cramping irregular heart beat, as I've been given a diagnosis of probable primary hyperparathiyroidism don't you think these symptoms lean more to this than T3? I was doing OK on T3 the gp decrease my T3 from 40mg to 30mg on these results.. TSH.. 0.05...T3 6.6...now the decrease as left me with TSH 23.7..T3 1.5..t4 2.50..so very hypo.. The gp as not spoke to me about these results despite me trying to contact her 4 times I was put over to a hospital gp who sent the T4 medication to my chemist, So as I said to the gp if you think all my symptoms are due to T3 medication I'll come off it and go on T4 for a 7wk trial.. Just to call her bluff slowdragon as my symptoms of primary hyperparathiyroidism have not gone but now I've got the bowle/stomach symptoms to boot I had these symptoms the last time I was on this medication. As the surgery don't want to deal with me which showed as that gp didn't even contact me with the hypo results just put over to the hospital gp I was actually standing in my surgery and just asked the gp to do the T4 prescription but we're told no gp could do it so hence the hospital gp doing it for me.. You couldn't make it up.. I'm going to request my thyroid bloods to be done next week as I can't wait the 7wks it's 5 weeks now so just hope they can do the bloods in the next week then I want bk on T3 or as you say on the other T4 medication you mentioned in any case my symptoms are not due to my T3 meds doctor and endo😠

[SlowDragon Administrator in reply to birkie]

I suggest you write a short summary of main issues and test results in chronological order

Dose, brand, symptoms and results

Keep it short

Send copy to GP, practice manager and endocrinologist

None of them know their a***e from their elbow

Also recommend wearing a Fitbit or equivalent and keeping records of resting heart rate and activity levels….or currently…..inactivity levels

[birkie in reply to SlowDragon]

Hi🌹

Got my fit bit on.. Its weird as my last bloods were clearly hypo but I feel hyper🤷‍♀️ but that could be the para thing as to much calcium can cause fast heartbeat, sweating and shaking obviously the bowles /stomach problems are a result of going bk on the T4, my surgery are honestly freaking me out in not caring what happens to me, I'm honestly grasped at the hay bail in trying to get them to just listen to me in relation to all my symptoms, I asked for my FSH to be done some time ago as I said I feel hyper and I sweat bad at times but gp /endo say this as nothing to do with primary hyperparathyroidism (it's listed in the symptoms) 🤦‍♀️ so I said could you check my FSH they refused saying it would be a waist of time as their is no connection with thyroid or parathyroid to FSH.. I've already done a letter to the CCG to complain as I asked to talk to the practice manager to be told she is working from home so I e mailed her on 23rd March no response, I phoned several times to be told she's not in then I called in to the surgery again could not see her, I now find out she does not even work in our surgery anymore and hasn't for over a month🤷‍♀️ I've been deprived of seeing a gp about my hypo bloods and of seeing the practice manager so hence the letter to the CCG.. But I will as you suggest write to the surgery to with my concerns, thank you 🌹🌹🌹

[Batty1]

It sounds like your allergic to something inside if your thyroid medication and as suggested maybe getting a different manufacture would be helpful as well as trying to split your pill and taking it twice a day versus the once a day and maybe you do this already.

[birkie in reply to Batty1]

Hi, ❤️

Thanks for the reply, yes I split the table but I've been on T4 before when I had my thyroidectomy in 2019 same symptoms my bloods were awful but as always my gp made me persist with them anyway I felt awful like I do now no improvement in my T3, T4, TSH I eventually got the gp to send all my blood work to the endo who actually put me on T3, I'm only doing the T4 for a trial as my gp is blaming my ongoing symptoms on T3.. They are nothing to do with T3, more to do with primary hyperparathiyroidism, for which I got a letter from the endo saying I probably have this... Its all complicated and the endo and gp truly have no clue what they are doing, they can't separate to to primary hyperparathiyroidism symptoms and thyroid symptoms, this T4 thing is simpley to show the endo/ gp that my symptoms have nothing to do with T3 all symptoms remain, after coming off T3 and going on T4 no change only now I have the bowle/stomach p to boot..... Ho this thyroid life😭😭😭😭

[Batty1 in reply to birkie]

I know what you mean Im without a thyroid and my health has just deteriorated and no matter what its never because of my missing thyroid. I can’t function without t3 I become a very angry person for some reason.

[birkie in reply to Batty1]

Hi 🌹

You are right, the thing I've learnt over these years with enormous help from members on here is endocrinologist don't really know much about thyroid conditions 🤦‍♀️ my gp and endocrinologist don't seem to understand I have no thyroid and treat me as if I'm hypo with a thyroid, my endocrinologist and gp decreased my T3 because my TSH was 0.05...t3 6.6) I thought I was OK on this as I had no symptoms of being severely overactive only wanting to urinate constantly, very thirsty bad bone/joint pain with bad bone vibration this is an awful sensation if feels like your sitting on your phone when it vibrates, I also have irregular heart beats and sweating these 2 things can be overactive symptoms but can also be high calcium to which is associated with primary hyperparathyroidism, they just don't seem to get it so they go with the easiest option it's my T3 causing the problem 🤦‍♀️ even though the parathyroid bloods were over range, goodness it's like being in a war fighting the very establishment that are supposed to be helping us🤦‍♀️🤦‍♀️