Cannot tolerate Levothyroxine

[stephensmith]

Been increasing Levo from 50micro grams to 125 since last March. Since taking Levo I have felt worse than prior to taking the tablets. Joint aches, Heartburn and terrible itching. Went Hypo on last increase to 125.

Have decided to stop taking tablets to see if I am physically better off

8th March 13 - 50mg

TSH 21 (0.3-4.5)

T4 9 (9-23)

350 (211-911)

Vitamin D OK getting copy of results

Ferritin 181 (22 -322)

8th July 13 75mg

TSH 9.7

FT4 14

4th Oct 13 100mg

TSH 9.4

FT4 15

25th Nov 13 125 mg

TSH 4.2

FT4 14

I have an appointment on Wed to GP and will ask for referral to private endo (got names from Louise).

I guess I am one of numerous people who cannot tolerate Levo.

[sezzy]

Hi do you take your medicine with any food or other medicines? Maybe your not absorbing it ?x

[stephensmith in reply to sezzy]

Hi sezzy, I have tried last thing at night and first thing in the morning. Thx

[sezzy in reply to stephensmith]

In the morning do you makesure you leave in 4 hours before taking any supplements? Such as iron , calcium including gaviscon type medicines? Also have you had a t3 test could be your not converting x

[stephensmith in reply to sezzy]

Hi sezzy, I do not take any supplements. I take a statin but allways ensure it is 8 hours apart. I even went 2 months without statins to see if they were interfering. Usyally have to take a rennies around 2 hours after thyroxine if taking on a morning, however had a long spell when taking at night without rennoes. I will ask gp for T3 test. I swapped to my wifes doctor as I persuaded her to test my wifesT3 . Yes rather strange that we both are hypo !!!!!

[helvella]

I assume you have tried both Mercury Pharma and Actavis products? And both have the same effects...?

thyroiduk.org.uk/tuk/treatm...

Rod

[stephensmith in reply to helvella]

Hi Rod, actavis has been the main product at 50 and 100 with MP being used at 25. Therefore I have allways used actavis and never MP on its own. The symptoms seem extreme for what appears to be different fillers. No harm I guess in trying just MP on its own. Thx

[Hidden in reply to stephensmith]

I have seen advice being given on here not to mix the brands you use.Also,many are questioning Mercury Pharma at the moment myself included.Some have put in yellow cards .

I am having muscle aches,itchy legs and breathlessness,which others have complained of too.wasn't feeling good on 50mcgs and now feel even worse on 100/75.Am having FT3/FT4 tests to see if it's a conversion problem before changing meds.I think there may be a problem with the fillers too.Hope you find out what the problem is.It 's not an easy thing to solve,when your GP doesn't understand and you have to wait 3 months to see your Endo !

[stephensmith in reply to Hidden]

We seem to have similar symptoms. I will be doing the same with FT3&4 tests later this week. Will then pay to see a private endo

[Hidden in reply to stephensmith]

Thanks for your reply....I would be pleased to hear how you get on and results of your FT3/FT4 tests..though sorry you have to go private.I'm never surprised that people do though.I have waited 3months to see mine ( 10 Feb) after the initial meeting via the NHS.May have to consider seeing him at his private clinic too if need be.It seems to be taking forever to get problems sorted.

Best wishes...hope all goes well for you.

[stephensmith in reply to Hidden]

HiMarfit, Great news. Went to see GP today and doctor (young lady) suggested I might be better off with a T3 tablet. "Oh NDT" I said. She looked at me and said " It is nice to talk to someone who has taken the time to look into their illness (Thanks to people on this site). She has referred me to an Endo. I chose the Endo as I have decided to go private (you can't take it with you) and got the name from Louise. It is good that a young doctor is not just T4 and that's it.

[Hidden in reply to stephensmith]

That is super news Stephen you must feel elated to have someone who appears to be working with you to get your well being back on course.Keep in touch.....It will be good to follow your progress.Hopefully things can now move forward for you.You are right to put your health first ....I think I will also go private if I have to.

I am getting my FT3/FT4 tests done next Wednesday and seeing my Endo 10th Feb.and will also post how I get on......picking up latest TSH result tomorrow.Best Wishes to you and hope all goes well.

[stephensmith in reply to Hidden]

Forgot to mention that GP added T3 to my blood test form. With the comment might as well save you some money. You should get a list of endos from Louise. No point in paying private only to find the end will not recommend T3. Hope your results are what you hope for

[Hidden in reply to stephensmith]

I'm sure you will have a good Endo.If he is from Louise's list he probably comes recommended by another member,like mine.Good luck and I hope you get everything done that you need,to move forward to your recovery.

[ribbon]

That ferritin looks rather high - could be a symptom of inflammation according to other forums I've been on. Could you have food allergy causing inflammation. Tests for inflammation include food allergies, CRP, ESR, rheumatoid factor. Also, there is lactose in most thyroxine meds - are you lactose intolerant?

[stephensmith in reply to ribbon]

I have had tests for CRP, ESR and rheumatoid factor. I believe it is problem with T4 as my levels have remained low despite increase on Levi. Will also get T3 tested

[stephensmith in reply to ribbon]

Sorry Ribbon only just read the end of your reply. I am not Lactose intolerant or have food allergies. My wife is a Coeliac so I am aware of a Gluten free diet. thanks

[ribbon in reply to stephensmith]

Great you've ruled all that out. Didn't realise you were on Levo. Not surprised you're still unwell. I was ill on it for 13 yrs. Switched to Natural Desiccated Thyroid six months ago. Its been slow because my adrenals were struggling and that was unmasked by Natural thyroid meds, so I"m on low dose hydrocortisone for a few months to get used to the Natural Dessicated Thyroid. Feeling better now than I have in many years. Good luck to you

[stephensmith in reply to ribbon]

Hi Ribbon, Great news. Went to see GP today and doctor (young lady) suggested I might be better off with a T3 tablet. "Oh NDT" I said. She looked at me and said " It is nice to talk to someone who has taken the time to look into their illness (Thanks to people on this site). She has referred me to an Endo. I chose the Endo as I have decided to go private (you can't take it with you) and got the name from Louise. It is good that a young doctor is not just T4 and that's it.

[ribbon in reply to stephensmith]

Excellent result! And if Endo declines Armour (and I hope he/she does give it to you), then T3 is certainly a big improvement from Levo. If you want NDT you may have to keep pushing. Perhaps say you don't do well on any synthetic medicine? Personally, I have multiple reactions to synthetics. I'm sure you'll find your way and very best of luck.

[stephensmith in reply to ribbon]

Good advice thanks. NDT it is

[stephensmith in reply to ribbon]

Ribbon, how did the natural thyroid meds unmask your adrenal problem thx

[ribbon in reply to stephensmith]

I developed symptoms similar to hyperthyroidism - palpitations, breathlessness (on and off), muscle weakness (so bad I sank to the floor a few times and couldn't get up), nausea. However, I knew my pulse was still very low as was my basal temperature, so I guessed it was adrenalin rushes from adrenals trying to cope with new metabolic energy provided by NDT (I've had to do my own research and self-monitoring of symptoms over the years). Luckily I finally have an endo that listens and he is giving me three months of low dose hydrocortisone (10mg divided into two doses daily) with review and hopefully will only need cortisone for a year or so until adrenals recover. I don't appear to have Addisons, thankfully, just adrenal fatigue after 13 yrs on useless Levo, and it's not usually treated. He's a teaching professor of endocrinology and is willing to look at the big picture, so I'm lucky to have found him. Every one of the others over the last 13yrs were worse than useless. I am beginning to feel like a new woman. Keep persisting and don't give up

[stephensmith in reply to ribbon]

Hi Ribbon,

Good news, met with Endo (private) and now on low T4 (50mg) which I can tolerate albeit a few spots and a rash and 20mg of T3. Off to my GP for the prescription which should not be a problem as she recommended T3

Fingers crossed

[ribbon in reply to stephensmith]

Good to see you're making progress, Stephen. I don't know much about T3 (I'm on NDT which has both T4 & T3 along with other metabolites) except that it's a lot better than T4 alone. I'm not sure about T3 doses, but I'd say you'll get lots of advice here on the forum if you feel you need to increase etc. Very best of luck. Hope you feel better very soon

[curlycurly]

Hi your not the only one who can,t tolerate this drug.I was prescribed Eltroxin and just my luck the manufacturers don,t do it any more.I,m off to my G P today to get this sorted as i,m going backwards not forwards.Hope you get sorted maxine.

[stephensmith in reply to curlycurly]

Let me know how you get on thx

[SoozieQ]

HI,

Same here !...felt worse than before on Levo...still covered in horrible rash after almost 10 weeks - ( stopped Levo on 25th Nov 13 )..after a lot of arguing - went to GP last Monday - 'demanded' at T3 test ..she didn't even have it listed on her bloods form...but said she would 'call her guy at the lab '.....I got a phone call from a lady at the hospital on Thursday - said she wanted me to have an over the phone consultation with MR. Al-Bahrani - who would discuss thing with me ? ? ? Sure enough, got the call on Friday - (he is a clinical pathologist who specialises in parathyroid problems - not an endocrinologist as I had seen before )..he went through all my latest blood works - explained some things and at the end of the day said " I am not going to give you a T3 test - I am going to e-mail your GP now - and TELL her to issue a prescription for T3 medication " ...you could have knocked me down with a feather !!!! He said that I obviously do not get on with LEvo - even though it had slightly improved my readings - physically I felt worse - so lets try T3 !!! I got a call from the GP surgery last night saying that the GP had sent the prescription straight to our local Boots store - and that it was ordered in especially for me - and I can pick it up this morning !! AM being started on very small doses on a 30 day trial period. SO , at the end of the day - I had to Pay £180 to see a private Endo - because the GP's were doing nothing constructive...he didn't really help much if Im honest - and out of the blue - this new guy gave me basically a full private consult over the phone for free - and has done what I asked ! Feel like I wasted £180 now !! but am happy to at least be given a chance to try the T3.

I live on the Isle of Wight - - not sure where you are situated - but may be worth telling this tale to your GP ?

WIll keep posted .....Best of Luck.

[stephensmith in reply to SoozieQ]

Great result. My GP is very young and is led by me after researching on sites like this. Will certainly put the idea in her head or ask if one of the other GPs (there are over 15doctors at my practice). Hope T3 works for you

[stephensmith]

Hi reallyfedup123, My Ferritin results were posted with my original post and seem to be OK. I will get the GP to test the remainder. My Cholesterol went up to 10 when I came off the statins for 2 months to ensure statins were not the problem. Back to around 5. If I can get my thyroid sorted maybe I can reduce strength of statins, thanks

[mandy-white]

I felt worse the more thyroxine I took. Dr and Endos told me I only felt so ill cus I wasn't taking enough. I eventually decided to switch to NDT. I felt a bit better but couldn't increase it enough. After 18 years after being diagnosed I finally feel better now I am on T3 only. I just couldn't tolerate any T4. I have now even nearly lost a stone in weight, which I haven't been able to do for years. This is not advice, just how I was.

[stephensmith]

Thanks Mandy, just got my appointment with endo. Early Feb. I will try to get NDT straight away as my guess is synthetic T3 will again make me worse. After 10 days of no Levo I feel much more relaxed, joints, muscles achesaches itching and heartburn have all improved. I now feel like I did before going to the docs March 13. I was surprised that I could not tolerate levo as I have never had reaction to any form of tablets in the past. I am rally pleased you now at last feel well.