No endo appointment

[birkie]

I posted my results on here after being diagnosed with hyperthiyroid my t3 level was 24.2 my GP has been trying to speak to the endo for an appointment ..he has just rang to tell me I am going on another drug propylthiouracil. 50mg 2 to be taken twice a day..this is what the endo has suggested.he did mention about iodine but she wants to see if this drug brings my levels down...can I just ask as anyone on this site been on this drug and did it work,,as I was taken off carbimazole as I had a really bad reaction to it,,and how long does it take to work..as I feel awfull 😭😭😭😭😭

[birkie]

Hi reallyfedup123

First thank you for your reply

I would rather have surgery,I have suffered for over 2 years trying to get diagnosed the bloody menupause was always brought up as my symptoms I knew this was wrong..in the 2and a half years I have attaked my bowl rendering me 10 days in hospital from passing blood both ends😤 But consultant didn't find anything wrong I told him I was attaking it...he just laughed...I have attaked my thiyroid several times and can tell when I am I..Am now partly deaf in my left ear...ENT appointment found nothing I can write my name on my flesh..my GP said it was just skin irritation😤😤 I am so fed up I feel rotten I can bearly manage to make a cup of tea my shaking as eased a bit due to beta blockers but I'm still not well..i don't know if you feel the same way but I feel like my life is over..I'm 56 but feel 86...😭😭😭😭😭😭😭😭😭😭

[birkie]

I have not been abroad..I was diagnosed with ME/ fibromyalgia it ruined my career I worked for Estée Lauder selling make up I could not stand at the counter I was fatigued constantly..it came from a very bad hyperparathiroid illness I had but my doctor didn't detect it for 6 weeks so it was spewing calcium in to my blood stream..I never recovered and was diagnosed in 2006..but this is worse the fatique is awfull even with rest..the tremors were really bad I could not hold a cup..the sweating is also awfull..my doctor knows about the parathiyroid illness and so does the endo consultant she treated me for it..so it's puzzling that the endo wants me to try the drug for 6 wks..so it's 6 wks of waiting to see if I feel an improvement 😤😤😤😤😤😤

[Valarian]

Propylthiouracil, or PTU, is an alternative to carbimazole, generally given to women who are trying to conceive, or in the first trimester of pregnancy, and people who have reacted badly to carbimazole. It carries a bit more risk of liver damage than carbimazole, which is why it isn't usually the first choice, and can be a bit less convenient as it has a shorter half life, and doses therefore need to be split across the day.

I've never had it prescribed myself, but there are people here who have - maybe if you post (or repost) with 'PTU' in the title, you will get some responses.

Here is some info:

btf-thyroid.org/information...

It works in a similar way to carbimazole, so although it will begin to impact production of new thyroid hormone straightaway, it may still take a few weeks to get through what is already available in your body. In the meantime, if you're suffering from a rapid heart rate, palpitations, breathing difficulties or tremor, your GP may be able to prescribe beta blockers, which should at least take the edge off the symptoms. The usual approach with both carbimazole and PTU is to be retested at regular intervals (eg every 4-6 weeks) to check how well thyroid levels are coming down - your dosage will probably be adjusted to reflect this.

What was the range for your FT4 test ? (usually in brackets after the result). Also, did they test FT3, TRAb or TSI, and TPO ?

[birkie in reply to Valarian]

Hi

I am on beta blockers but had a bad reaction to carbimazole I was on that for 4 wks from the 21 of Sep this year then taken off it,I have just been put on PTU this we'd been on it 3 days so will need at least 3 wks to see if it works🙏🏻 my shaking has eased slightly but my fatique is still the same as is muscle weakness I can not stand without feeling like collapsing,,my surgery only did t3 which was 24.2 extremely high (someone on here said)..I have had no other blood work done since the 20th of Sep 2018,,my GP thinks it's graves but said my endo app would conferm this,,,,but no endo app,,my GP said when he spoke to her she advised him to prescribe me the PTU..for 6 wks🤔 To be really honest I feel that I have gone threw enough,I noticed the symptoms getting worse in Aug I saw my GP on the 20th Sep got results on 21st Sep..so I would say iv been played around with trying drugs....I would rather have the thiyroid out and be done with it..😭😭😭😭😭

[birkie]

My blood work only did t3 this was 24.2 and said overactive..and I am my heart was doing 145 bpm I was taken to hospital with my heart rate I am sweating,can't keep still itching till I bleed the worst is muscle weakness I cannot stand without feeling like collapsing doing stuff is really hard..I have been like this from the end of Aug the only small relief is that the beta blockers has taken my beats down and has slightly helped the tremors but not to what I would like,,I feel worn out like I have run a marathon every day..😭😭😭😭😭

[birkie]

Thanks for your reply

It helps a lot to talk to other people about this..I get the felling docs like to keep you ill tho God knows why the nhs are under enough stress..I feel if I feel the same in another week I will ask my doc to refer me to the endo to discus my options for surgery to be honest I'm that desperate to get my body back to normal I hate hospitals and going under the knife..but if it gets me my life back I will do it..🤔🤔

[birkie]

Hi

That's my point I am unwell but my doctor see me in surgery and points out my tremors have gone down my heart rate is better and this drug PTU will make you well again and after that speech he said so that's ok isn't it!!! Well no it's not..I might be wrong but should my endo not be sending me for a scan on my thiyroid I already had hyperparathiroid illness in 2006 and no scan was done then.i obviously have problems with my thiyroid glands but the people in charge don't think theirs a problem...😤😤😤😤😤

[MrsR]

Hi Birkie I am now 63 and developed hyperthyroid when i was 55 in 2010. It took a long time to stabalise me with Carbimozole, but even then you cant keep taking it indefinetily due to it damaging other organs, i am thinking propylthiouracil is possibly the same . Once i was stable i opted for iodine abalation, after about 3 months i actually stated to feel well again. It is a long process with both the treatments, and it has worked for me... i dont say my symptoms have gone completely but they are manageable and results on thyroid are not so drastic that i have to take levothyroxine, although each blood test i have my dr says it is actually dying so i will become hypo eventually. The down side is i put on 5 stone on carbimazole and it is so so difficult to shift, i too have fibromyalgia, costocondritus and IBS, but the iodine abalation has stopped the palpitations the shortness of breathe and the profuse sweating too . I would have it again if necessary , as you can only have it twice them you have to have surgery... thing is even now they dont know how long the radiation in the iodine pill that you swallow works for.. its not just for the 2 weeks post treatment, i it could be months/ years . Good luck x

[birkie in reply to MrsR]

Hi

Thanks for your reply

I could not stomach carbimazole I felt so unwell on it I was taken to hospital..I was taken off them..then left with only beta blockers..just been put on propylthiouracil without seeing the endo I feel really ill I cannot get about without feeling like I'm going to faint my legs are so weak I'm shaking and sweating I can only walk a short distance before these symptoms kick in then I have to sit down right away..I have already collapsed in a shop in my town..😭😭😭😭