13 years of hell & no sign of getting well, Thy... - Thyroid UK
13 years of hell & no sign of getting well, Thyroxine is killing me . have now got some T3 and going for the DIY approach, any Tips?
If you can't get the support of a doctor, I would suggest taking it slowly. You could start by reducing your thyroxine by 50mcg and replacing it with 10mcg of T3 but I'm not a doctor, this is just what I would do if I were in your position and my GP was happy for me to do this if he had been allowed to prescribe it.
I've heard that Paul Robinson's book about recovering with T3 is very useful, but I haven't read it myself.
Basically, if you are going it alone it is important not to rush and to monitor your symptoms such as resting heart rate, body temperature and other symptoms.
Sorry I couldn't be more help.
Carolyn x
Thank you Carolyn, sounds like good advice, I was taking 200mgs Thyroxine Daily but instead of my symptoms diminishing I am developing new ones all the time, allergies, pain, fatigue , weight gain, and recently plantar fasciitis, which has been so debilitating I need a frame to walk, I’m 54 years old but feel twice that, the frame was the final straw for me and now I’m fighting back, if the medical profession refuses to help, them I’ll go it alone, I acquired my T3 from overseas I found it difficult to obtain it here in the UK, GP’s are so reluctant to annoy the big pharmaceuticals by handing over affordable alternatives. Mia x
With the allergies you are developing, it would be a good idea to look into whether you may also have adrenal fatigue. If you do, it would be a good idea to start treating that sooner rather than later. There is a lot of information on the internet about it, but the main thing is trying to reduce stress levels and getting plenty of rest with your feet up. Getting vitamin/mineral levels up is also helpful. Adrenal fatigue is something that GP don't acknowledge even though the WHO says it's a big problem.
You may find that T3 helps with your adrenal recovery so you will need to monitor carefully because, as your adrenal function improves, you may find your body is better able to use the thyroid hormones and you may become hyper and need to decrease your dose a little. This is a good thing but it does need monitoring so be careful to record your temperature and pulse and other symptoms.
Wishing you luck with it 
Although we don't condone going it alone here, we do understand folks' frustration, have you tried a private doctor? (you can email Louise for ones in your area). Personally I couldn't afford one, so still trying the NHS route.
There's other things you can do, like making sure Vitamins and minerals are at optimal levels (again private tests are available) for irons ferratin B12 folate & Vit D. I didn't think they were important but they are, building blocks to health.
Hubby had plantar fasciitis (aka policeman's heel)- a few physio sessions sorted him with painful stretches (still does them) shoe inserts & avoiding bread etc too - I'm not saying there's a connection, just he feels better. As Carolyn says you must monitor yourself.
with very best wishes Jane 
x
Hi Jane, thank you for your response, I am registered disabled so expensive private consultations are out of the question, my allergies include alcohol, caffeine, onions, morphine (opiates) and acute urticaria, I have chronic asthma, vertigo, and arthritis, I’m no longer frustrated but angry and at the point of utter despair, whatever I try now can’t be any worse that where I’m at.
I sympathise with your husband and his ‘Policeman’s foot’ the physio is no walk in the park
so to speak.
Mia x
Yep, the vits and minerals all in a days work lol.
Mia, you take care & do what has to be done - my personal feelings are that we know our own bodies more than anyone else, but my admin tag dictates I have to state the obvious - for others to be aware, we're not docs here just fellow sufferers.
I am still waiting for a replacement bannister as hubby killed it when he could hardly walk, btw I got him the inserts from boots (£14 a pair), and he has to wear shoes with a heel now- shh! he's a bit coy about that one! AND he got me a parking ticket on my car at the hospital physio visit (as he couldn't walk far) I was surprised he could make it back & suggested a taxi - nope he's a man! lol J x
I have taken Thyroxine for 20yrs at 250mgs per day and around 6yrs ago I developed allergies like you .My face swells up like a Pumpkin or just a huge lip do you experience the same symptoms.Seeing Dr for first time with my complaints tomoro and my demand for T3. It must be so frustrating for you to be so ll and not getting the help that seems to be out there.Only just found this siteAll the best
Hi, sorry to hear about your swelling and allergies, yes my face lips swell up and, I'm sometimes covered from head to toe in wheel like blisters, I am allergic to myself, it’s called acute urticaria for whatever reason (no one seems to know why or what causes it) but the body’s system produces too much histamine, this could triggered by cold, heat, stress, etc etc... Around your mouth can be serous because it can breakout inside your mouth, and in your throat closing your airways, and cause anaphylaxis shock, and you will need to carry and epi pen , if it does get this bad you will probably be given a high dose of steroids, but for less serious outbreaks you might be offered an antihistamine and zantac don’t ask me why, but for some reason the mixture on the two drugs makes them more effective when used together.
Hope this helps, good luck.
Mia
I have very similar although I do not get wheel like blister I get red blotches. I take antihistamine daily but haven t been offered zantac, I have had 2 throat swelling and they were very very scary so now I have prednislone on me always.I don t have Epi pen but think I might just need one. You have been extremely helpful and I thank you very much
Your welcome ... Fexofenadine and Ranatadine(Zantac) are really effective when used together, best of luck.
Mia
You’re absolutely right about knowing your own body, slow, cautious with a healthy dose of common sense, will be the rule of thumb, that and a documented record of everything from temps to vits high’s to lows etc.
Sorry about the banister, full collateral was it? I have a hubby with a spinal injury, so disasters are commonplace in our house, he recently collapsed and broke the scaphoid bone in his wrist; he’ll do whatever it takes to avoid the washing up. lol.
Mia x
I just started taking T3 12 days ago, but I'm only on 62.5mcgs of Thyroxine so not sure what to advise you regarding your T4 dose as it's so high, why Dr's can't see it's not working and try something else is incredible isn't it.
Anyway, we all react differently, I started on a 1/4 (is it the Mexican T3?) I had to get a pill cutter. Anyway a 1/4 didn't do anything, so on the 3rd day I did half, and wow it's fabby! My basal temp is out of Hypo range and av daily temps are now normal 37.0 and steady so guessing my adrenals are ok (I did the saliva test and they were mixed)
I've also been supplementing with Iron, Vit D3, C, B12, Ashwagandha, Selenium, Zinc, Magnesium, but the T3 is what made my brain fog and afternoon lethargy disappear.
If I increase now I will do so in 1/4's as I don't want to go hyper, but at least it won't take long to get out of my body if I do accidentally.
Good luck Mia x
Thanks for your response, every bit of information at this stage is like gold dust and very much appreciated, I acquired T3 from Turkey 3 days into it and I’m still breathing with no toxic side effects. & yea I think if I need to increase I will also do it by the ¼, & skip gung-ho approach.
How are you feeling after 12 days whats your total doseage now? did you stop taking Thyroxine or reduce the amount ? how much T3 are you taking and where did you get yours from? you say you are taking half, but half of what quantity ? sorry this is starting to sounds like an interigation, lol an answer to one of those questions would be good, and good luck with your T3.
Mia x
Haha,
no probs at all
I got my T3 (25mcgs tabs) from an online supplier in Mexico.
I was only 62.5mcgs Thyroxine.
Now I've added 12.5mcgs T3 once a day at 1pm as I tend to get tired between 2 and 4pm.
I've asked on a FB forum I belong to and they said dose according to symptoms, but cut back on T4 rather than T3. My basal temp is out of hypo range and steady, my average daily temp is now 37.0/36.9 so adrenals are good.
My hair has stopped falling out, I'm not getting dizzy/weak, sleeping for a good 6 hours now. I feel positive and happy, no fogginess.
The only things I still have are left thigh cramping/right shoulder pain (I sit at a desk for work nearly all day) and at night I hear my heart beat in my ears, but not as bad as it was.
It's early days, and I'm scared to increase but maybe another 6.25mcgs might help the other things.
I'm hoping to go onto NDT in the New Year but waiting for stocks of Thyroid-S to come in.
How do you feel now?
Nikki
Hi Nikki, thanks for getting back to me, wow it’s looking good your end, and in such a short time too, its only day 4 for me so too early to tell, no adverse effects from T4 withdrawal, maybe a little more tired, though I did sleep all night last night, despite the shoulder pain, and hairbrush full of hair as usual this morning, but as I said it’s still early days.
I can imagine if the T3 could talk it would say “miracles I can do, the impossible takes a little longer”.
I have an identical Twin and we both have Hypothyroidism she is as debilitated as I am, we have both decided to take the T3, but she’s a little reluctant to stop her T4, because when she was diagnosed she had Myxedema Coma and was very ill, so the T4 saved her life, but as she said “I believe its keeping me alive, with no quality of life” so her fear is keeping her from giving it up. She’s also worried in case her T3 supplies are interrupted or delayed in the post.
This is an awful disease made all the more terrifying by having to turn to fellow sufferers for help and support instead of being able to go to your trusty family GP.
Good luck Nikki, I hope you find your ideal doses soon, and you can get your life back, keep me posted.
Mia x
I can understand your sister's reluctance after being that bad. The thing with T4 is it really is just a storage hormone whereas the T3 is more direct, the tricky part is getting the dose right.
I asked about the shoulder neck issues and have been told I should be taking 400-500mgs of magnesium plus 5000 D3 per day and the cramps will go away.
So worth a try 
Same to you too and to your sister x
I have been on Thyroxine for 20yrs and never realised til I found this site today that it could be the cause of my horrendous allergies. My face swells up and the kids call it "got your pumpkin face".Also headaches only stopped after around 10yrs. What is T3 and where do I get it. I only take Vitamin D as suppliment for energy loss.Sorry I can t help you but thank you for helping me .
Hi Henderson - welcome to this site - you have come to a very good place. Sometimes this learning journey can be daunting to start but gradually you will learn so much that will help.
I fear your question may get lost within a post which is 3 days old.
Can I suggest you post your story as your own blog or perhaps ask a question?
That way it will be seen and people will help you.
Thanks Carolyn, sound advice which is now onboard.
Mia x
Mia, Split the dose and don't be scared of the stuff, it's not rocket fuel or speed!! The BNF says start at 10 or 20 mcg and increase slowly up as far as 60 mcg if needed in a split dose. (you drop the T4 accordingly)
If you have dodgy adrenals, it will tax them and you will end up sleeping mid afternoon....
I asked my doctor for T3 years ago when the T4 only, had stopped working after 10 years. He said no so I bought my own and tried it, without the help of any forums or anything,,, (it was scary).... but after a few months I was so much better and I went back and told the doc. He was horrified at my buying from abroad but could see it had made me better so he prescribed it. This was about 10 years ago and I still get a prescription.
Have a read of Pauls book, it explains the link between adrenals and T3 very well.
Good Luck!
G
Thanks that’s exactly the response I was hoping to get, phew!! that’s a relief, that is unless of course I have been sold some questionable narcotics, I guess I’ll soon know if I start dinging of the walls, as for sleeping afternoons I’ve had the 3pm slump for the past 7 years & for all that time I have had two bed times, makes planning anything nigh on impossible.
When my daughter was little she asked me if zombies really existed, obviously I assured her they did not, “boy was I wrong” I feel like the living dead, minus the living bit.
your approach is exactly how I planned to confront my GP, get better first, a kind the ‘proof of the pudding scenario’, he can argue with scientific evidence but he can’t argue with actual visible facts, well here’s hoping.
Thanks G
or is that G thanks
Mia x
Questionable meds? What would be the point of an Internet pharmacy selling meds which were wrong? What would they gain from it? Ok I can understand thm selling fake Viagra for all the hopeful men out there, but why would they bother with fake t3. The market can't be that huge and the stuff isn't terribly expensive......so there are no great profits. ..
If you not too sure about them then pm me where you got them from and I will check against the tried and tested pharmacy list on the other uk thyroid forum.
G x
Pharmacy list also here: thyroiduk.org.uk/tuk/treatm...
Louise
x
Many thanks Louise, truly greatful.
Mia x
Hello Louise - On the same subject - could you please let me have a list of any pvt endos in the midlands. I live in Stafford and my GP has just made a NHS referral for me but I have to wait for a couple of months and I am not sure that I am going to be able to see the one which my GP has asked for. I am getting really desparate as any type of thyroid medication I take has the most debilitating effect on me - apparently because of a 'conversion issue'. Hope you can help. Thanks, Florence
Hi Florence
Unfortunately, we do not have a list of Endos. You could try here:
thyroiduk.healthunlocked.co...
thyroid-info.com/topdrs/uni...
We do have a list of Private GPs and Healthcare Practitioners - drop me an email if you would like it louise.warvill@thyroiduk.org
Louise
x
Hiya Mia,
Is it Tiromel you have? My advice would be to reconsider taking T4 at all.It is clearly not helping you after 13yrs and you are getting worse as each day passes.
I find that taking T3 alone in the evening and early hours(3am) has helped me more than any regime I have tried before and believe me I've tried EVERYTHING! There is much literature online regarding dosage etc..There is certainly nothing to fear as Galathea points out.If you try it and you feel no benefit then perhaps T3 is not the answer.But it's worth a shot.
Have you tried going gluten free? Or supplementing with vitamin D? Most of us in the Northern Hemisphere are deficient in vitamin D and I'm hazarding a guess that you don't get out in the sun much being disabled.Pharmaceutical grade Omega 3 is another supplement I'd recommend from experience and last but not least vitamin B12.I've recently started using a vitamin B12 spray from Better You and I think its helping me somewhat.
Please don't despair.There are answers out there.This site is excellent.There are a lot of knowledgeable people here with helpful advice.Keep checking in and keep us updated as to how you're getting on.
Regards Joan
Yes Tiromel, I have tried gluten free but I have so many dietry allergies now I limited as to what I can eat. there seems to be so much conflicting information out there its difficult to know what right and what's not, it's all obviously suck it and see, what seems to work for one indevidual is a no no to someone else, Horses for courses seem to be the only guidelines.
Its madness that when you feel so ill that you have to turn to the internet for help instead of booking an appointement with the good old trusty family GP.
Mia x
Levo did me no good at all. I am fine now on Naturethroid and a little T3 and did try a few other NDT's but this one suits me best. I did try T3 too and did o.k. on it much better than on levo.
This is a link re T3
web.archive.org/web/2010122...
and a link of general thyroid problems. The links within these two may not work as the websites are in probate at the moment but there are other topics within the following one.
web.archive.org/web/2010122...
PS when you reply to a particular comment, you press the blue 'reply to this' and a new box appears so that the person is alerted that you have replied, otherwise they may not be aware.
Thanks for all the advise and the links every piece of information is knowledge and all knowledge is power, I have trusted the power of the medical profession for far too long and like many have come to the conclusion that they do not always have our best interests at heart after all, and the best person to trust to take care of you..... is you.
Oh and thanks for the site guide , yea got it now …lol thanks again.
Mia x
I too felt dreadful while taking T4 and T3. When I read Paul's book I realised why. My TSH is so low its almost unreadable and a very low TSH causes all your T4 to be converted to Reverse T3, which then blocks the receptor sites and stops the T3 working. If your TSH is very low too I wonder consider stopping the T4 altogether as its clearly not working. You will need to wait quite a number of days for the T4 to clear out of your system but then once the T3 gets going you should loose some of your hypo symptoms. I feel so much better since I stopped the T4 nearly 12 months ago now. I do need a full replacement dose of T3 which I have forced my Endo to give me by refusing to take any T4. I have lost almost 1 and a half stone and I can now play a fast game of tennis 3 times a week.
Good luck,
Heather
Hi
How much is a full replacement dose of T3? I've been gradually tinkering with my dosage and wonder what I will end up on. I'm not taking any other thyroid medication.
I need to vary the amount of T3 according to how active I am. On a day when I play tennis I need about 80 mcg of T3, but on a quieter day I can manage on 70mcg. This is somewhat more than the usual dose of 60mcg that is the accepted maximum dose, but we are all different. Interestingly I also still need to take medication during the night or I wake up with terrible sweats, pulse racing etc. As soon as I take another 10 mcg dose of T3 it all settles down again and I can sleep again. As I dont have a TSH level at all, I do need a full replcement dose.
Heather
Sorry to ask for yet more info but, I notice you say you 'also need to take medication during the night' so does this mean that on an average day, you take 60 mcg in the day and then 10 more before you go to bed or do you take 70 and then wait to see if you wake up and need 10 more or, is this some other type of medication you need to take, ie something different from T3?
Sue
The only way that my Endo let me take T3 is to take multiple small doses spread out throughout the day, so I start the day with 25mcg as a loading dose between 6 and 7 am, then 10 mcg at 11am, 2pm and 5mcg at 5pm. At bedtime I take another 10mcg and then I wake with a hot flush (adrenal rush) warning me that I need some more T3 between 2 and 3 am I take another 10mcg. It is quite a pain keeping up with the time and doses but it does work for me. I have absolutely no T4 in my body now so I am reliant on a steady stream of T3 medication to keep me going day and night. If I forget a dose, I start to get hot sweats which I think are adrenal rushes telling my body that my T3 is low and to go and get some PDQ!
Hope this helps,
Heather
Wow, sound, realy posative ...many thanks
Sounds awesome, so you don’t take any T4 at all? I have stopped my 200mg dose of thyroxin and just starting T3 but was thinking of reintroducing the thyroxin in a couple of weeks time, it’s really scary stuff, a bit like escaping a desert island in a blow up raft, despite feeling so ill now, I remember what I was like before I was given T4 and at the time it was a life saver, but now I feel like its keeping me alive only, but without any quality of life. It’s hard to believe that T3 can actually take its place.
I look at people walking, running, playing tennis and think to myself, “how do they do that” my mobility is so limited, just to go for a walk would be a fantastic achievement, anyway good luck with the weight loss, you must be overjoyed.
Mia x
Mia,
I have absolutely no T4 in my body at all. Afterall T4 is only a storage hormone and is not active, T3 is the active part which does the work, so as long as you have enough T3 you do not need T4. My body cannot utilise T4 as my TSH is so low its unreadable which causes the T4 to convert to Reverse T3 which blocks the receptors where the T3 works. So its T3 only for me!
When I was so very ill at the beginning I could only walk 2 or 3 steps with a stick and slept all day. In fact I was so ill that my brain has been very badly damaged by lack of appropriate treatment giving me dementia like symptoms. Its taken me many years to get hold of the right treatment so that I have been able to recover and can now be a lot more active again. Please take heart that when you get the right treatment for you, you too will be able to do so much more and be active again. Positive thinking is also part of the plan. I do now have a diagnosis of dementia but it seems quite stable and since getting onto the right dose of T3 for me, my brain scores have actually increased which is really puzzling the dementia medics!
Good luck,
Heather
Hi Heather, it sounds like you’ve had more than your fair share of misery, but your recovery looks bright and that’s amazing, it’s hard to believe that I can ever walk normally again without the aid of a stick or my frame, so it’s truly heart-warming and uplifting to here that people are not only getting better but also reversing the awful effects of this disease, I very much hope that you carry on baffling the professionals with your continued recovery, many thanks.
Mia x
I have also given up on any T4 and take only T3. I've yet to find the right dose but seem stable, although still way too pudgy.
With regard to plantar fascia problems, have you also checked the Achilles tendon, usually one problem goes with the other? Also, I doubt these would be isolated as the fascia is continuous and around all of the body therefore one part affects all parts. How one walks, carries bags, shoes, etc., all have an effect. (A good plantar fascia excercise is to pull a cloth across the floor towards oneself with the toes, flexing the foot and pulling then releasing the toes and gripping and pulling again.) Emotions also affect the fascia. (I have recently treated someone with swollen feet and Achilles tendons and they no longer have these problems.)
(Student of Body Re-alignment.)
Thanks for the advise, my mobility is poor and my grip week but hopfully when I get my strength back I can be more proactive in the the self help departement.
Mia
