This might help someone?

I just thought I would share my experiences with Hypothyroidism in the hope it might help someone out there! I was diagnosed about 15 years ago with Hypothyroidism and given Levothyroxine which I took without question, I had enjoyed good health and worked all of my life so this blip was very underestimated by me. I didn't get better but had a gradual decline in health until I was almost housebound with various other illnesses such as Fibromyalgia, Angina, Atrial Fibrillation, Vertigo, Depression, Sleep Apnea and more! I had to leave my well paid job and retreat into a sub life. Then by pure chance I stumbled onto an American website that was warning against taking Levothyroxine as people were suffering certain severe side effects, I had been on this drug for 7 years by this time, I battled for another 2 years before anyone would listen to me and at this point I was forced to pay privately to see my wonderful Endocrinologist who has helped me enormously since. He suggested I use Armour Thyroid and wrote to my GP asking for them to prescribe this...they so did not want to do this but I begged one of the GP's I didn't normally see and she did prescribe them. My life changed beyond all belief, after some 12 months all of my 'illnesses' had gone! I felt like I had been reborn, I was really well on Armour Thyroid for years, right up until they 'reformulated' it and didn't tell anyone...suddenly I became ill all over again and just didn't know why? After some further investigation it resulted in the Armour Thyroid being the culprit, so my Endo suggested WP Thyroid...I became well again! Yay! BUT then that became unavailable due to 'production problems' how can a company gamble with people's lives like that? I think Hypothyroidism is so underrated by the medical profession! So then I was forced to try various NDT meds that I could buy, I tried Raw Thyroid...this did nothing, then I tried Thyro-gold which did nothing and also had side effects, I tried Metative which caused very bad stomach acid and constipation...now I am on Thyrovanz which up to now is the best I have tried - although I have to remove the powder from the shell as it causes me to have severe constipation otherwise. Apart from this I am well, levels normal and no apparent side effects! What I would say to anyone who wants to get well is that you have to fight if no one listens to you and to analyse whether your medication is causing you to have other illnesses due to the side effects of these drugs? It may be that I am an unfortunate individual who is overly sensitive to chemical medications...but it seems strange that I am well on natural medications....so maybe I am not alone! Hope this helps!

[Hashi-Monster]

Thanks for sharing

[greygoose]

Unfortunately, 'natural' hormones don't suit everybody. They made me very ill. I am only well on synthetic T3. But, I agree, we should be allowed to experiment and find what suits us. Glad you found yours.

[danym in reply to greygoose]

what were your symptoms on the NDT meds?

[greygoose in reply to danym]

Difficult to say, exactly, because it was a long time ago. But, it was like the usual hypo symptoms x 100. I put on an awful lot of weight, and the fatigue was such that I ended up almost bed-bound. I just couldn't function. Bad hair, bad nails, bad skin, etc. etc. etc. The usual non-specific symptoms of just not being right, but far more intense.

[danym in reply to greygoose]

omg, you sound just like me, how long have you tried to stay on them? I've tried all ndts and I just don't feel well on them, same symptoms, I feel spacey, tired, weak, dry skin and eyes, hair falling, headaches, my tests are showing the NDT is working, but I feel awful. Levo bothers my stomach very bad even on antiacid medication and the NDT doesn't seem as bad on my stomach, I don't know what to do

[greygoose in reply to danym]

I'm not on NDT anymore - haven't been for at least 8 years, which is why I have difficulty remembering how I felt. But, I did stay on them for 3/4 years because my doctor at the time was adamant that NDT was THE way to go and wouldn't believe it didn't suit me. But, then, due to a series of events that I won't bore you with, I went onto T3 only, and found that was the way I felt best. Everyone ought to be given the opportunity to try T3 only at least once.

[danym in reply to greygoose]

how much t3 are you taking?

[greygoose in reply to danym]

75 mcg daily.

[danym in reply to greygoose]

thank you. Do you take it all at once? Also, is T3 3 or 4 times stronger than T4, I keep reading conflicting info.

[greygoose in reply to danym]

Yes, I take it all at once in the morning, and wait an hour before eating or drinking anything other than water.

Not surprising you keep reading conflicting info, because it's something that is completely incalculable. For hypos, anyway. It all depends on how well you convert. If you don't convert at all, then T3 is 100% stronger than T4. But, I don't know what you mean by 'stronger than 74'.

[danym in reply to greygoose]

sorry, I meat T4, I edited my response, should i do a 3 or 4 times conversion?

[greygoose in reply to danym]

I really can't answer that, because I'm not really sure what you're planning to do. Are you planning to swop all your NDT for T3? Are you still taking NDT? If so, how much? Do you have any idea exactly how well you convert? Do you have labs, FT4 and FT3, taken whilst on T4 only?

[Hennerton]

Your story is very typical of many members of this site. I have tried all the variations of thyroid medication and can be doing well, when suddenly everything changes because a formulation has altered or the pharmacy cannot get the make I prefer. I slink up to the counter to order my repeat prescriptions and they must want to run and hide, as I am such a pain to them. But they do it willingly, try to get what I need and just smile and do their best, probably wondering what all the fuss is about, because everyone is told the fallacy of the “you just take a little white pill”...

Thanks for posting and keep fighting!

[Hidden]

Lovely to hear your doing well after this awful illness 💜

[Lulu2red]

Thank you for sharing your story, I think we need more on here to give others hope. I was on Levothyroxine for 19 years, what a waste of a life. I did manage to hold down a full time job, but really struggled. Dragged myself into the office. I think if it had been a more physical occupation I would not have survived. Endocrinologist at King's College London said "you cannot be as I'll as you say because most of our thyroid patients are unable to work". I asked her for a trial of NDT but she refused stating there is no evidence it works any better. She discharged me saying there must be something else wrong with me. This from a woman who teaches future Endocrinologist's. I hold her responsible for all the pain and health issues that followed. What I cannot understand is that they know the truth deep down, but continue to watch people suffer a half life or no life at all. Several people where I worked had hypothyroidism but all got well in a matter of weeks on Levothyroxine. I think they were whispering behind my back that there must be something else wrong with me too. I have been on T3 only for 5 months now and my problems are resolving, although not even within range yet. I have put on 7 stones over the 19 years, it's slowly coming off. The mucin has gone for sure, did you have any weight issues?

[SlowDragon Administrator in reply to Lulu2red]

Suggest you get Thyroid DNA tests. This can reveal why some of us struggle with Levothyroxine and need addition of T3

Many find they have DIO2 gene variation

This tests just DIO2

thyroiduk.org.uk/tuk/testin...

This tests DIO2 and a few more other options

bluehorizonmedicals.co.uk/t...

[Lulu2red in reply to SlowDragon]

Thanks, I have tested positive for faulty DI02 gene. The second test looks more comprehensive though, will keep it in mind if I don't recover.

[SlowDragon Administrator in reply to Lulu2red]

I have DIO2 heterozygous variation

On T4 plus small dose T3 prescribed by NHS

Now doing very well

[danym in reply to SlowDragon]

what dose on t3?

[SlowDragon Administrator in reply to danym]

20mcg per day

Split dose - 3 per day, 8 hours apart

10mcg, 5mcg and 5mcg

[asidist in reply to SlowDragon]

hi slowdragon, would you happen to know of any companies that do this testing in the states?

[SlowDragon Administrator in reply to asidist]

Ask a few DNA test companies

It's DIO2 - letters

Not

D102 - all numbers

[Hidden in reply to Lulu2red]

Thanks for your reply, aren't some of the so called health professionals so very cruel? They really should be struck off! Yes I did have massive weight gain, coming off slowly now but all very distressing and so unnecessary if only someone had listened! Good luck with your journey!

[MissGrace in reply to Lulu2red]

I really identified with what you said about other people you know being hypo but doing fine on Levo. It makes you feel really isolated when it just doesn’t work for you. When I was diagnosed I felt like every second person I met was hypo, had never been too ill, took Levo as prescribed and were okay. A lot of them with no real clue about the many nuances of the illness. They kept saying to me ‘you’ll feel it kick in and then you’ll be fine’, only it never did, or I’d have a couple of days when I felt it was working and then I’d go back to feeling rubbish again. It makes the struggle somewhat harder when fellow-sufferers fail to understand, often through their own ignorance of the very illness they have! That’s what makes this forum so so valuable. People who understand, are interested in getting informed and who have their own journey to share.

[Gemmadoo]

Hi,

Thank you for feed, very interesting. Can you get Thyrovanz without Prescription? At present I am on no medication as I had to come of the Levothyroxine as it didn't agree with me. Any suggestions on who I could contact would be grateful.

[Hidden in reply to Gemmadoo]

thanks for your reply, yes you can get Thyrovanz without prescription from New Zealand, they will also accept Paypal if you ask! This is their web link: thyrovanz.com/

Good luck!

[Gemmadoo in reply to Hidden]

Thank you so much. Kindly appreciated.

[shaws Administrator]

I think our bodies know best i.e. if we feel well on a particular thyroid hormone that's the aim. The problem is that most doctors will only prescribe levothyroxine, they now know no clinical symptoms, with which doctors used to diagnose us - before blood tests and levothyroxine. We were prescribed NDT upon our clinical symptoms alone - few doctors know any symptoms nowadays and many patients suffer for years with symptoms because TSH doesn't rise to 10 - in other countries people are diagnosed when it is 3+. They also suffer because doctors are no longer allowed to prescribe NDT, due to False Statements made by the BTA or T3.

thyroidscience.com/Criticis...

Dr Lowe, was also an Adviser to Thyroiduk before his death and despite requesting a response from the BTA etc every year for 3 years, they never did.

We the patients know what is truth and untruth through our own personal experiences.

Those who do well on levo will not be searching the internet.

[Hidden]

A big thank you to everyone who has replied...some of your comments make very interesting reading and I will be speaking to my Endo about some of them! Good luck everyone! xx

[dina7]

Thanks for posting Dollypoppins. So glad you've found what works for you. Just goes to show we are all different and we all need different meds/supps/diets to work for each of us, something 'they' just can't or won't understand. I did well for ages on Thyroid-S and then it seemed to stop working but I'm now much better again on Metavive. But some people are allergic to pork so great to know there's an alternative, I wasn't aware of the Thyrovanz.

[Tia-]

Hi Dolly, what side effects did you get with ThyroGold as I'm interested in trying natural thyroid supplements rather than Levothyroxine (been on for 18 years) & looking into Thyrovanz too. Plus what's the difference between ThyroGold & Thyrovanz? Thanks in advance x

[Crogers37]

I checked out Thyrovanz, I’m so excited to try it bc my story is almost identical to yours. I see they offer New Zealand and Argentina, which do you take and what’s the difference? It maybe the gelatin in the shell capsule, I can’t take gelatin but I will remove it and put in a capsule I can tolerate

[danym in reply to Crogers37]

have you tried thyrovanz, is it working?

[danym]

what dose of Thyrovanz? are you still on it?