Does anyone here have an underactive thyroid?

melbury

I am really upset this evening.

Doctor phoned me and, as expected, said my TSH was still way too high (16.87) and that I should increase my dosage to 100mcgs.

I then asked him if he could switch me over to Eltroxin from the generic one I have been having for the past five weeks, which I think is causing all sorts of side effects. He said that they had been instructed by head chemist (I don't know if he means chemist as in our local chemist shop or chemist as in man in charge at NHS) to switch all patients who are currently on Eltroxin over to generic levothyroxine, but didn't seem to know why. I told him it was because it was much cheaper.

Anyway I have arranged to go and see him on Wednesday and if he can't put me on the Eltroxin I think I will buy some on the internet because I just want to see if it does in fact make any difference to the side effects.

It makes me so angry :mad: :mad: I have hardly ever used the NHS and certainly not for prescriptions and yet they are being so mean - it is not even an expensive drug.

Does anyone know about this?

Sorry for venting - just makes me mad when they can treat people who have never paid a penny in.

gingababe

I too suffer from an under active thyroid, I am on levothyroxine I am just under 9st & 5ft3" so am not over concerned with my weight, I was diagnosed after giving birth.... I am losing loads of hair, my memory is shocking & I am not sleeping very well & when I do fall asleep, I seem to fall into a very deep sleep, & I have a lump that has appeared in my neck. & my hair has gone really weird fuzzy like on the top layer. & my skin is really spotty , it hasn`t been this bad for years, in fact when I was in my teens.Anyway I went to see the doctor who asked if I was self medicating !!!!! I only take the medication I was told to take which is 100mg, but are saying that my tsh,t3 & t4 are reading strange ? not sure what they are on about??
I can`t even pull my hair out as I`m losing too much, been sent for another blood test.....
& I have also been told that it may affect my fertilty??? Can anyone shed any light ??

kymrob

yep i suffer too!! its quite common i'm on a low dose and have been for 17 years i am 33 does it get worse with age?

gingababe i'm on the same tablets
my short term memory rubbish but long term good!
i have one or two spots i put it down to u a thyroids!
my speech can be all over the place when i am sleepy!
i was told fertilty can be affected, but i also have pco!!
also have very ichy legs???!!!

gingababe

kymrob I don`t have itchy legs but they ache a little like tooth ache???


Ginga

kymrob

no mine don't ache!
brittle hair too!!
eyes get sleepy and hubby knows when i forget to take tablet!!
i am losing weight at the moment! will always have to watch my weight!
i also have carpuls tunnel in both wrists which i think is related!!!
really i am falling apart!!
don't have regular periods ( which is not a bad thing for me)

TomsMom

gingababe wrote: »

I too suffer from an under active thyroid, I am on levothyroxine I am just under 9st & 5ft3" so am not over concerned with my weight, I was diagnosed after giving birth.... I am losing loads of hair, my memory is shocking & I am not sleeping very well & when I do fall asleep, I seem to fall into a very deep sleep, & I have a lump that has appeared in my neck. & my hair has gone really weird fuzzy like on the top layer. & my skin is really spotty , it hasn`t been this bad for years, in fact when I was in my teens.Anyway I went to see the doctor who asked if I was self medicating !!!!! I only take the medication I was told to take which is 100mg, but are saying that my tsh,t3 & t4 are reading strange ? not sure what they are on about??
I can`t even pull my hair out as I`m losing too much, been sent for another blood test.....
& I have also been told that it may affect my fertilty??? Can anyone shed any light ??

Hi Gingababe

Have you read through all of this thread? I know it is getting quite long but if you haven't read all of it can I suggest you read a couple of my replies - post numbers 93 and 95 on page 5.

Blood test ranges are mentioned and explained which may help you understand a bit more. It also explains why it is important to ask about your blood test results and keep a note of them. Do you have your blood test results? If not ask for them. Do not be fobbed off - get the actual numbers and the reference ranges, you are entitled to them. Then see where in the range you are. That will tell you if you are nearer the low end of FT4 (towards hypothyroidism) or at the top end (towards hyperthyroidism). Same with FT3. TSH is the opposite, a high TSH means underactive.

Hair loss is a very common symptom of an underactive or under-treated thyroid. Before I was stabilised on the correct dose of thyroxine, every time I washed my hair I lost so much it clogged up the plug hole and the bath started to fill with water as if the plug was in!

Hypothyroidism can affect fertility and lots of other things but, get on the right amount of thyroxine for you, get the thyroid stabilised and things should gradually get back to normal.

My guess is you probably need to be on 125mcg. Get your results, ask your doctor to explain what he meant by are saying that my tsh,t3 & t4 are reading strange ? not sure what they are on about?? . If you find that you are low in the range for FT4 and FT3 and high in the range for TSH ask him if he will allow you to have a trial of increased thyroxine, give it 2 to 3 months and see how you feel then. But keep a diary, make a note of everything that changes/stays the same for reference when you go back.

gingababe

TomsMom wrote: »

Hi Gingababe.

Hair loss is a very common symptom of an underactive or under-treated thyroid. Before I was stabilised on the correct dose of thyroxine, every time I washed my hair I lost so much it clogged up the plug hole and the bath started to fill with water as if the plug was in!


Thats exactly what is happening with me I shower & wash my hair & I have a full bath without the plug, I have just had another blood test & will go back to the doctors & get the full results & report back... he said last time that he was going to send me to a specialist, as my reading didn`t make sense & had I been self medicating, I replied well yes I take the tablet myself didn`t realise he wondered if I had been changing my dose. doh!

I will go back to the beginning & read the thread & thank you for your help.

TomsMom

melbury wrote: »

I am really upset this evening.

Doctor phoned me and, as expected, said my TSH was still way too high (16.87) and that I should increase my dosage to 100mcgs.

I then asked him if he could switch me over to Eltroxin from the generic one I have been having for the past five weeks, which I think is causing all sorts of side effects. He said that they had been instructed by head chemist (I don't know if he means chemist as in our local chemist shop or chemist as in man in charge at NHS) to switch all patients who are currently on Eltroxin over to generic levothyroxine, but didn't seem to know why. I told him it was because it was much cheaper.

Anyway I have arranged to go and see him on Wednesday and if he can't put me on the Eltroxin I think I will buy some on the internet because I just want to see if it does in fact make any difference to the side effects.

It makes me so angry :mad: :mad: I have hardly ever used the NHS and certainly not for prescriptions and yet they are being so mean - it is not even an expensive drug.

Does anyone know about this?

Sorry for venting - just makes me mad when they can treat people who have never paid a penny in.

I had my prescription made up a couple of weeks ago and got Eltroxin as normal, as already mentioned it has been named on my script for a few years now. I certainly haven't been told that I must be switched to another brand.

I do know that pharmacies are directed to obtain and dispense the cheapest brand they can get when they restock so that is why patients sometimes get a different brand when renewing their prescription when the script just says "thyroxine". However, it doesn't make sense that a pharmacist can dictate to a GP. It is the GP who decides which medication is prescribed, be it branded or generic, but the NHS will use generic on grounds of cost. As you say, thyroxine is very cheap and the difference between a brand name and generic is very small in this case.

Go to your appointment on Wednesday and discuss with him what you have mentioned about you having these side effects on the generic brand but not on the Eltroxin and could you please go back on Eltroxin for a trial period to see if the side effects disappear.

I would advise against buying thyroxine on the internet.

(1) You do not know if you are getting the genuine article from a supplier who does not require a prescription. (2) Some of the Eltroxin available online is not made by Goldshield, who make the Eltroxin that is dispensed here on prescription. That is what you would have had before. Some of the online Eltroxin is made by GlaxoSmithKline and may have different ingredients and you could get the same side effects as with the generic ones you have now.
(3) Some suppliers require a prescription - which would have to say Eltroxin I should think - so where do you get that if your GP wont prescribe it.
(4) You will probably have to import it from America - £15 for 100 x 100mcg tablets, plus postage. Any number bigger than that will take you over the £18 limit for importing good from overseas and then you get walloped with VAT and charges!

Your best bet is to calmly discuss this with your GP. If he wont budge ask him for a referral to an endo. If you're still not satisfied you could always go the private route but be prepared for big bills for consultations.

melbury

I have just found this little bit of news - this could well be the reason why chemist had told doctors not to prescribe Eltroxin as they didn't have any of the 50mcgs tabs in stock. If you go down the page a little bit and read under Supply Issues - Goldshield Products.

http://www.pjonline.com/pdf/_donotindex/pj_20080322_nb.pdf

Perhaps I will be lucky then after all - fingers crossed.

TomsMom

melbury wrote: »

I have just found this little bit of news - this could well be the reason why chemist had told doctors not to prescribe Eltroxin as they didn't have any of the 50mcgs tabs in stock. If you go down the page a little bit and read under Supply Issues - Goldshield Products.

http://www.pjonline.com/pdf/_donotindex/pj_20080322_nb.pdf

Perhaps I will be lucky then after all - fingers crossed.

Well done for finding that!

You could ask for your tablets to be prescribed in 25mcgs which would then give you the flexibility, once you're on 100mcg, to drop down if you feel the necessity. Easy enough to split a pill - just get a pill cutter for a couple of quid from the pharmacy. Presuming, of course, that your GP is happy for you to do that. It is cheaper to prescribe the 100mcgs than the 25mcgs but thyroxine is not that expensive so I don't think it would be prohibitive for the 25s to be supplied.