Finally feeling normal after a year and a half ... - Thyroid UK

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Finally feeling normal after a year and a half of being diagnosed with t4 and t3.

kizziemaria profile image
24 Replies

I have never felt right since being diagnosed a year gone September 2011. Luckily I do have a Younger Dr who prescribed Liothyronine without me asking as I had a dreadful reaction to levothyroxine and had to stop taking it immediately as I could not breath or function. I was given T3 only and WOW I felt bloody fantastic but gradually symptoms returned and my hair was getting thinner and thinner. I decided to start a small dose of levothyroxine, luckily this time I did tolerate it but had horrendous side effects of itching down below and rawness, I was in agony, I suggested changing brands and MY GOD what a startling improvement, it appears I was allergic to the fillers grrrrrrrrrrrrr. As if I wasnt already suffering enough, anyway I,m up to 125mcg of levo and 30mcg of lio, my aches and pains have diminished and I feel nearly NORMAL, YIPPEE, i,m doing everything I thought I would never do again. My hair has stopped falling out and I feel there is light at the end of the tunnel, PHEW, thank god :)

Lets hope I can keep updating with further improvements.

Good health fellow sufferers :)

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kizziemaria
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24 Replies
kizziemaria profile image
kizziemaria

Oh and I forgot to add, I take my levo at night before bed and my t3 in the morning.

PinkNinja profile image
PinkNinja

What great news to hear! I'm really pleased that you found the solution and that you have a GP that knows what he is doing!

I hope you continue to be well and please do keep us updated :)

Carolyn x

kizziemaria profile image
kizziemaria

Thanks Carolyn,

I never thought i would see the day when I wrote something positive about my health on here lol. If I can help just one person from the misery of thyroid disease I will be happy because many times I have felt like giving up.

Pam x

PinkNinja profile image
PinkNinja in reply tokizziemaria

Perhaps in the future would you like to write your story and submit it to Thyroid UK's case studies? It is always good to have success stories and ones where alternative thyroid replacements are prescribed are very helpful. If you are interested in doing this at some point in the future you can submit it via this link;

thyroiduk.org.uk/tuk/get_in...

Of course, there is no pressure. It is something you can do if you want to but we understand if you'd rather not. It can be quite a private thing for a lot of people :)

kizziemaria profile image
kizziemaria in reply toPinkNinja

I will do that yes some time i n the near future :)

NaamiSue profile image
NaamiSue

Hi Pam,

Great news that you are well on the way to NORMALITY!!!!!!! Do you happen to know which of the fillers you are allergic to and did your GP do any tests to be certain of this? I have a strong suspicion that I am sensitive to some fillers used in tablets and would be interested to glean more information.

Thanks,

Sue xxx

kizziemaria profile image
kizziemaria in reply toNaamiSue

Hi Sue, I told my gp of my suspicions after reading about it online. Because I respinde so dramatically with a different brand there was no need for tests. I cannot take actavis thyroxine at all, it makes me so ill. I have reported it to yellow card which ia a side effects medical board. They have concluded that my suffering was theactavis product. Hope you feel better soon. X

NaamiSue profile image
NaamiSue in reply tokizziemaria

Thanks Pam....I am feeling well, just fine tuning :) xxx

kizziemaria profile image
kizziemaria in reply toNaamiSue

Lol I know what you mean. I wouldn't wish this godamn disease on anyone. PLEASED your well Sue xxz

shaws profile image
shawsAdministrator

It is amazing when just a change of tablet can make such a difference. It is just having a sensible doctor who can let you try an alternative.

Clarebear profile image
Clarebear

Great news kizziemaria :) thanks for letting us know - its so great to read success stories ;) xx

kizziemaria profile image
kizziemaria in reply toClarebear

Many thanks x

Congratulations kizziemaria :) that is wonderful that you have achieved satisfactory level of well-being. I am sending you lots of hugs. Stay well.

love

E xx

kizziemaria profile image
kizziemaria in reply to

Many thanks

pam x

nightingale-56 profile image
nightingale-56

Actavis also gave me the most awful stomach pain and for this reason and the fact that my son (special needs) would not tell you if he was in pain, I got doctor to prescribe Mercury Pharma Eltroxin, but I notice it has got changed to Mercury Pharma generic, which is also alright.

kizziemaria profile image
kizziemaria in reply tonightingale-56

Actavis is my poisen, never gain will I take it. I work with special needs :) Love my work and my special people x

kizziemaria profile image
kizziemaria

Hi petals I was on t3 20mcg only and felt amazing for quite a while, several months but unfortunately my hair fell out terribly :( my dr suggested introducing t4 very slowly as this is needed for hair growth and nails etc. My hair hasnt made any amazing recovery but it has stopped falling out finally but i think this is due to my levels being right for me with the dose I am on. I will keep you updated with how my hair is as I have not only shed hair but a shed load of tears over this issue :( :evo made me extremely ill but try with a tiny dose of mercury pharma which is what I,m taking. My meds were increased 6weeks ago and I was given an extra 25mcg of levo but not the brand I take, guess what!!!!! I felt like someone had given me poisen, stopped taking it and quartered one of my 100mcg and thank god the feeling of death went so I know 100% I cannot take anything but mercury pharma which was goldshield, apparently a better quailtiy levo. Don't give up just yet, I might be paving a way here for fellow sufferers lol.

pam x

kizziemaria profile image
kizziemaria in reply tokizziemaria

P.s I am 46 and people think I looked younger so I,m hoping once I,m leveled out for a few months I will look great again. I guess being hypo slows everything down even aging so thats one bonus going for it lol x

nightingale-56 profile image
nightingale-56

Am sure you are a special person too Kizziemaria, most who work with special needs are. At the moment it is only local councils who are not very special - trying to cut down wherever they can, but those on the ground have my grateful thanks. Janet.

kizziemaria profile image
kizziemaria

Yr right nobody cares. My dr did not suggest it no, I was just flukily given it and realised all my flu symptoms disappeared that was until they gave me actavis again. Think I started on half a 25mcg of levo with my t3 until I could tolerate it. Do it very slowly. My chemist order my t4 brand in just for me. As they knowy history of side effects x

kizziemaria profile image
kizziemaria

It will take a while to build your levels up so dnt expect immediate results with your hair, it might get worse before it stops falling. Isnt Naturethroid t4 and t3 ?, be careful you dnt take to much t3 as you will definately lose more hair xx

jules_6 profile image
jules_6

When I asked my g.p. for a specific brand - I was told the nhs cannot afford it and it is up to chemist to 'buy in' the cheapest meds available.!! What is this nhs coming to

. I am in bad state with muscle cramps (cannot stand for more than few minutes) exhaustion,flaking skin (past month - which I have never had before, despite always having to moisturise) hair loss, extreme thirst,pains in shin bones/Hip/buttock/groin; foggy head,lack of appetite/sudden hunger!?, very slow bowel transit,skin irritation,degenerative disease of spine (don't know if anyone else has this and whether it's connected to thyroid diseases). 6 weeks ago g.p. said blood tests showed thyroid low, but he said he is reluctant to increase my thyroxine - due to fact that January I did not collect prescription and he feels I am not taking tabs daily. I assured him I am taking thyroxine each morning, but that I could not walk in January and could not get a home visit - nor emergency supply of thyroxine from chemist over phone, as

they said I had used a different chemist for the previous prescription. i explained to my g.p. that I had to resort to use my deceased Auntie's 125mcg thyroxine for January period; but he still has made me wait full 6 weeks. He did, however, prescribe 800iu of calcium x 2 daily

and after 2 days I was unable to stand - due to severe muscle cramps in piriformis region and same amount of pain in left lower abdominal area - which came on within a few mins of standing, but took longer to subside when resting than piriformis muscle.

I thought all the pain was due to spine! Then, after 1 week, I suspected the high doses of calcium I had recently been prescribed. NOW I wonder if it's the thyroid all along (I don't think the calcium helped me). Why does it take so long to get anywhere with diagnosis/treatment in u.k.? I have asked g.p. for 1 yrs+ to check for hyperparathyroidism

ass two of my sisters say I have ALL the symptoms, but this hasn't been done.

jules_6 profile image
jules_6

The reason I have gone into so much detail in previous comment - is in case other readers have similar problems.

kizziemaria profile image
kizziemaria

typical hypothyroid and I was all of the above. You need to start taking regular treatment or you are never going to get stable levels. Order you prescription online from your nearest chemist and tick the home delivery option. I use it because I work everyday and they post it through the door for me. Sounds like you could benefit from T3 too.

I tell my chemist what I cnt take and they buy it in specially for me the thyroxine I can tolerate. they have it on the shelf out the back labeled up just for me for when I request it. It has took me over a year and a half of being to hell and back to get this far and thats because I have fought to get what I wanted until I felt somewhere near normal.

pam

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