Liquid Thyroxine

[Odinil]

Is anyone taking liquid thyroxine instead of tablet thyroxine?

[London3891]

Yes - I do. Tried a few brands of tablet last year when I started treatment (Teva, Actavis/Accord) but had symptoms that suggested an adverse reaction to the tablets so my endo switched me to liquid. I’m not certain whether it was indeed a reaction to the tablets, or whether it was actually that I simply wasn’t getting enough thyroxine and my body was complaining (was on 50-75 then, now on 100/125 alternating). No issues with adverse reactions since taking liquid, but hypo symptoms not fully resolved either - despite blood tests suggesting I should now be ‘fixed’...

[Odinil in reply to London3891]

Thanks for that. This is the problem they judge how they think you feel not by listening to us who actually know.

[vienna2010]

I took it in the past but it did not agree with me.

[Odinil in reply to vienna2010]

So what do you take now?

[vienna2010 in reply to Odinil]

I never got on with synthetic medication and did better on NDT. However, liquid thyroxine was a step up from the tablet form.

[Odinil in reply to vienna2010]

How do you go about getting NDT?

[vienna2010 in reply to Odinil]

I did it myself... ordered it and tried it.

[vienna2010 in reply to vienna2010]

I just read your reply below. I had similar problems to you. I had a heart monitor fitted, consulted a gastrointestinal specialist, ENT specialist blah blah. I tried to convince every doctor that levo was the problem but no one was willing to accept it such is the establishment's belief in this drug. I tried every brand on the market, liquid, tablet, etc. I also tried T3 only. In the end, I had to accept that it wasn't for me and I changed to the natural hormone. I don't have a conversion problem but my body just seems to prefer the natural hormone. I hope that you resolve the problem.

[Odinil in reply to vienna2010]

What do i have to do to go on natural hormone? Do i have to go it alone? Or private endo?

[Odinil in reply to vienna2010]

I wouldnt know where to start!

[vienna2010 in reply to Odinil]

It's difficult for me to advise you on this as we are all unique. You should maybe discuss it with your doctor or try and find a doctor who is open to listening to what you are going through and finding a solution. I was originally prescribed NDT but now I have to order my own and am managed by an endo who is open minded enough to accept that this is the only the thing that works for me. It's trial and error to find out what isn't working, why, and what is the solution. Listen to your body and gut instinct. You'll get there but just need to be patient in finding an answer.

[Odinil in reply to vienna2010]

The difficulty with that is even if i work out what is or isnt working im up against nhs consultants and gp's, ie T3 its like a dirty word all im told is they cannot prescribe it on the nhs even though they know you need it. Im a poor converter low T3 and very high T4. As soon as i start to quote what ive learned on here they shut me down and look uneasy its good to educate yourself but you are up against it the whole time.

[vienna2010 in reply to Odinil]

You can get T3 on the NHS as I was prescribed it in the past. Unfort., it's just a Q of finding a doctor/ hospital who will do it.... That was 7 years ago so unless things have changed?! You can definitely get it privately.

[Odinil in reply to vienna2010]

Yes i think its changed since then my gp said that the government has told all gp's that T3 cannot be prescribed on the nhs. How i understand it is that if my consultant at the nhs hospital decides to put me on some T3 she has to write to my gp and ask if he will fund it and apparently he doesnt have to. My consultant said she can give me a private prescription does that mean i have to fund it. She wrote to my gp stating that if i cant tolerate the tablets maybe consider making a claim for funds for liquid thyroxine she never got an answer. Apparently you have to have lumps and rashes all over your body due to intolerance to any tablets to get it on nhs.

This is how it seems now.

Did you ever take T3?

[vienna2010 in reply to Odinil]

I just read your profile. I was the same.... I never got on with levo from day 1. In the end, it was my aunt in the USA who suggested that I try NDT. An endo then agreed to let me try NDT and wrote me the first prescription. I took it and no side effects. However, due to the damage that levo had done, it took a while before I could retake any thyroid meds. I was very sensitive to everything. When I finally got on to NDT, it really worked. As I said, it's trial and error to see what works and, for some people like me, synthetic meds just don't work. You'll get there.... I know what it's like to feel frustrated and hopeless but experience has taught me that you can get your life back by listening to your body and doing what feels right for you.

[Odinil in reply to vienna2010]

Thank you. Im a positive person normally but dealing with this i feel totally out of control of the situation re consultants and gp's. Im sick of telling them how i feel i sense a brick wall go up straight away.Its upsetting and frustrating.

I am going to see a private endo as soon as restrictions are lifted face to face for a second opinion i do not trust what i am being told.

I have no idea how i source NDT or the costs.

[Beverleyb]

I have changed to liquid thyroxine recently, feel much better ..

[Odinil in reply to Beverleyb]

Thank you thats encouraging what brand are you on?

[Thyb]

Odinil I take liquid levothyroxine. I feel much better for taking liquid levothyroxine instead of tablets. I have Teva liquid levothyroxine (it doesn't have the nasties in like the tablet form ). Are you going to try it or are you already taking it?

[Odinil in reply to Thyb]

Hi thanks for replying. Ive been to see my consultant at Addensbrooke today, cut a long story short she has written to my gp suggesting he might try getting funding for me to go on liquid but had no reply. She's going to speak to the hospital pharmacy to see what other brand i can try, apparently ive got to try all brands and if none stop giving me horrible side effects she can then say to my gp that the only alternative is to try me on liquid thyroxine, i said but the gp will refuse like they do with T3 she said not if i say you clearly cant take thyroxine in tablet form. If i cant get on with liquid thyroxine she will suggest my gp agrees to put me on some T3. It took me 6 years after my op to remove my thyroid due to cancer to be just ok i was on Actavis and Wockehart and could cope but this all started when Accord took over Actavis never felt so ill. I tried Mercury Pharma and awful side effects so im now taking my 62.5 dosage with all Wockehart and still not feeling well. The consultant is having me fitted with a 24 hour heart monitor for the palpatations and asked if i wanted beater blockers i said definitely not why take something to mask the problem its the tablets i went to my gp as i was getting terrible reflux with MP tablets i was given reflux tablets as soon as i stopped taking MP the burning reflux stopped immediately. I refuse to take medication to stop the thyroxine problems. I couldnt believe it. My TSH has gone up to 4 i need to be under 2 because of the cancer she said to increase my dosage to 75mg a day which i had already done before my appointment this morning but i reduced it back to 62.5 again i cant tolerate a higher dose. My T3 is 4 and never goes any higher and my T4 is always in the 20's although she told me this morning it was 16.5 thats why my TSH has gone up i tried to tell her my T3 needs to go up but she didnt agree. Its no good trying to put my case forward i know ive got to carry on suffering until i find a brand that suits me and if not thats when my consultant can write to my gp and say i need it, my replied to her was then he can refuse. She said if the liquid doesnt work then she will write to gp again suggesting that i cant tolerate tablets i cant tolerate liquid so suggest he gives me some T3. What are chances of that. Also ive got to now carry on trying different brands until i find the one that suits me which is going to go on for months feeling awful. I give up. Whats worst is that when i started on MP the pharmacist said she is ha ing trouble getting MP now im back on Wockehart and a few days ago when i picked up my prescription i was given Teva when i refused as it clearly stated Workehart on my prescription i was told that they are having trouble getting Wockehart. I couldnt believe it so its the only one that allows me to feel semi normal and looks like they cant get it!!!!My consultant today asked if i had tried Teva i replied yes and im not taking it again why is everyone trying to palm us off with Teva when its known that people have been very ill on it. My trust went out the window after that.

[Thyb in reply to Odinil]

Odinil I truly understand the pain you are going through, it is horrendous. Have you tried saying to the Endocrinologist/GP 'Would you refuse a diabetic Insulin'. I tried all brands/generics:- Actavis, Mercury Pharma/Eltroxin, Teva, Wockhardt, Tirosint gel capsules etc etc. I felt worse when Actavis was changed to 'Accord Also'.....Not the same like they make out, I filled out yellow card about it.

I 'think' only way I managed to get liquid levothyroxine was when I told Endocrinologist/and GP I would not take any more of their 'poisonous tablets', and I did not take any for at least 2 weeks!

Don't give up @Odinil, keep ringing, e mailing, tell them you'll have to report them to the CCG as you feel so ill on the tablets....

Try and stay strong and do whatever it takes (daily) phone calls/e mails etc etc. Thinking of you. Big Virtual Hugs

🙏✌️

[Odinil in reply to Thyb]

Thank you so much it helps to know that someone absolutely knows what im going through.I thought i was going to cry while the consultant was talking to me it was out of pure frustration. I had an answer for everything she was saying but she kept coming back at me until in the end i said to be honest i feel like giving up oh no she said dont say that i said well it seems to me that i cant win, there is treatment out there that can improve my life and because of costs im being allowed to struggle through life. I told her i have educated myself through Thyroid UK as theres no other support re meds out there the hospital or gp doesnt provide any back up. I let her know the truth outrageous that patients are being denied the proper treatment that they deserve.

She didnt say much to that.

just that she will speak to the pharmacist to see what other brand he recommends. Im thinking of seeing a private

Endo not sure if they would help. The consultant did say that the issue of T3 is being looked into so things could change. She didnt elaborate on it but even so i need sorting out now.

Im glad you are ok thats good news. Did you get on well with liquid straight away and are you without symptoms. Someone on here said that its full of nasty fillers and felt terrible on it. Thank you again its just what i needed to hear ive just got home and feel encouraged by your reply that there is light at the end of the tunnel. Im now thinking ive got something wrong with my heart i told the consultant i never had palpatations before taking thyroxine it seems to go over their heads.

[Thyb in reply to Odinil]

Odinil Believe me I have shed tears, frustration, feeling so very ill, felt like lump in throat, heavy chest, yellow tinge (moustache area) lol I'm a woman, total exhaustion all the time, dizziness/lightheaded, weak legs, generally unwell ALL OF THE TIME and felt dreadful.

I frequently stopped taking them for a few days and started to feel better, hence, I know it was the lousy tablets.

Personally, I would be a little afraid of taking T3 as I've heard it can cause palpitations and the rest, so to speak. I have no doubt it works for some, but, for me I know I need to raise my ft4 level before contemplating T3.

In my case my TSH has 'Never' been even 2.5 or under, my ft4 hovers around 12, hence, I need my ft4 to 'rise' up to at least 18-20 to find out if then I can covert to ft3. Albeit, up until a Couple of Months ago the most levothyroxine I was ever given daily was 50mcg (no matter what TSH and ft4 was), as long as it was 'in range' GP/Endo seemed happy with it!!

I was diagnosed Hypothyroid in 2011, since then after Private blood results I found out I have raised TPO and TpaG so Hashimoto's.

For the last couple of Months I've been on 7.5mls liquid levothyroxine; I was started on 2.5mls last year, then up to 5mls, now 7.5, I have very recently started 'off my own back' taking 8.75mls daily. (Teva brand of liquid, it's different to the tablets, I sure couldn't take their tablets).

Ingredients:- Levothyroxine Sodium anhydrous, Glycerol, citric acid monohydrate, sodium hydroxide, (E219) and purified water.

Do you have any results to 'share' TSH, FT4, FT3? VitD, B12, Folate, Ferritin?

P.S. If you have access to GP, Endo e-mail addresses, perhaps e-mail them daily with your concerns, your side effects in particular. Also, it would be a great idea to phone both and leave answerphone messages daily (even though it's a Bank Holiday, they will hear the messages) even if they don't pick up the phone. Keep telling them it's Urgent and you cannot carry on with the tablets.

Have you 'ever' stopped taking levothyroxine tabs for a few days? I wouldn't recommend it, I just wondered.

Think positive, you can and will get a trial of liquid levothyroxine

P.S. Most important, NO SIDE EFFECTS, I Started taking the liquid last October xx

🙂🙏☺️😉

[Odinil in reply to Thyb]

Wow i think you are describing me. The lump in throat heavy chest discoloration above top lip lines appeared too im the age for such lines but they appeared after taking MP also a bloated face. All the symptoms you described.My TSH today was 4 and it should be under 2 very important because they dont want the cancer to come back.

I asked why had it gone up she said because i was under medicated 62.5mg i said i tried 75mg but couldnt cope with the side effects. My T4 is always above 20 which is high and my T3 never goes above 4.

A private Medicheck blood test showed my B12 and Folate was low in range, yet my gp says its in normal range even though i point out that its at the very low end of range. They did a full count blood test and tsh and T4 included but they wont do T3. It came back normal for B12 and Folate in brackets borderline.

I have B12 oral spray and a B complex supplement but i must admit i havent taken it everyday purely because i felt so bad on my tablets that i couldnt face taking anything else incase it was interfering with the thyroxine. Crazy situation isnt it! A couple of times i have not taken my tablets and i have felt so much better. I will wait to see what the consultant does next probably suggest another brand to try thats whats upsetting me that its just prolonging the inedible. Its criminal whats going on.

[Thyb in reply to Odinil]

Odinil It is absolutely criminal.

I have vitaminB12 BetterYou Oral spray but I prefer Nature Provides sublingual drops - Methylcobalamin plus Adenosylcobalamin 2400mcg It only contains reverse osmosis water (I have many allergies) so have to be careful what I take.....

Nature Provides raised my B12 from 266 to 780 in 6 weeks and I only took half of recommended dose it lasts Months - to be kept in fridge.

I also take Igennus Super B Complex, BetterYou Sensitive topical Magnesium spray, Drs Best Vitamind3 softgel, Nutroliq vitd3/k2 sublingual drops, cytoplan selenium (only twice a week selenium), nutrobioticals zinc 10mg (3 times a week), Drs Best Vitamin C with Q-C 1000mg veggie caps.

I tried BetterYou vitd3/k2 red box, plus green box vitd3 but sprays gave me mouth ulcers.....

It sure is trial and error.

P.s. levothyroxine tablets also gave me stomach problems amongst very low blood pressure and all the rest......

From your results, your ft4 is certainly high so surely you must Need T3....Incompetent GP'S Endocrinologist's.

Possibly when your B12 and Folate are optimal you should in 'theory's convert t4 to t3, but, I think you'll need selenium and zinc for that to happen. Ft3 needs to be at least 5.5 plus according to all knowledgeable on here...

You need Folate over half way through 'lab range' , B12 Over 550, vitd over 100, better about 120 if you have high antibodies.

I think you'll start feeling better when vitamins are optimal and hopefully on liquid levothyroxine. Onwards and Upwards complain and complain, tell them you're going to contact CCG to ensure you receive the medication you need to live and Always a good idea to say 'Would you refuse a diabetic Insulin', moreso, one that costs more if he/she couldn't take the cheapest

🙂😏

[Odinil in reply to Thyb]

Thank you so much im going to digest your reply keep reading it and see how i can increase my B12 and Folate. I have the same B complex as you and oral better you B12 spray i also have better you vitamin D oral spray 3,000 but apparently thats why too high a dosage so havent been taking it my vitamin D isnt low.I will certainly follow your advice look into taking the same as i feel i can relate so much to you and your journey.

I will read again tomorrow when i have a clear head haha!