Woman with ME makes a film: bbc.co.uk/news... - Thyroid UK
Woman with ME makes a film
Thanks for posting. I do wonder if she has had FT4 and FT3 tested. Probably not. Or if she did they may only have tested the TSH and T4.
About ten years after the introduction of tests and levothyroxine, 'new diseases' were named. CFS, ME, Fibro.
thyroiduk.org.uk/tuk/about_...
Actually the first detailed written description of fibromyalgia was in 1816 by Dr William Balfour, he also identified and described the 'tender points' in 1824. still earlier it was called muscular rheumatism in the 1600s changed to fibrositis in 1904. I could go on but what's the point. I am still wracked with pain, always, still exhausted, always, myofacial pain cascade still as bad as ever, foggy brain as bad as ever, sad back with a vengeance... etc etc but TSH supressed, ft4 low and ft3 6.08 with too of range 6.80. Vit d 120, b12 900, Ferritin had gone slightly over range so reduced supplements and need to re test when can afford. Ah shoot I could write an essay. Some people are misdiagnosed with fibro etc when they have thyroid issues, some people have both. I do believe thyroid plays a part in fibromyalgia but that's it, just a part. You can treat that part you cannot treat the fibromyalgia and saying its not real.... well sound familiar does it?
I am not medically qualified and the only time I had severe pain was when I was prescribed levothyroxine.
I didn't say it wasn't 'real' as I do know it causes severe pain. However, do you take T3 only?
web.archive.org/web/2010103...
Dr Lowe was an Adviser to Thyroiduk.org.uk and also ran the following:
web.archive.org/web/2010081...
NDT over two years, t3 only for 11 weeks, low dose only as it caused my blood pressure to skyrocket so back on NDt. After finding out about biotin big difference in test results and supporting adrenal with holy basil finally got ft3 up to 6.08. over six months ago. Having worst fibro flare for years at the moment and in a very dark place, wouldn't have responded with much more then a sigh if not as it seems the people, including some I like and admire, such as yourself, who dismiss fibro, me, and cfs as un or under treated thyroid, many do not seem to be aware of the differences just the similarities between the different illnesses. I have lord knows how many saved articles from Dr Lowe, all read and re read many times over the past few years. I wish I could dig the words out of my fogged up brain to explain but can't so will go to bed.
I need to word this carefully and it's nearly 2am; have had a stressful day and can't sleep...brain won't switch off. Here goes - there is loads currently about the state of the gut. (I only take T3 as got the DIO2 faulty gene & have been through the very low adrenal stuff). I've recently had a lot more energy and been more proactive, which I haven't been for decades. My brain feels so much better. I stopped all carbs but I am on high good fats. The high fat content in your diet doesn't seem to have worked for you though. I also take high dose vit C (2,000mg a day), vits D, B12 & multi B's, zinc, magnesium, selenium, 2 cheap garlic capsules a day (Wilkos). I've recently returned to taking all of them in readiness for winter. Either my diet change or the supplements have made a big difference. Before I moved to a new area seven years ago, I had a neighbour who had ME/CFS/hypothyroid and know what she was going through.
You need k2mk7 with vit d
since September 2015 been taking vit c 1000 with ferrous Fumerate 3 daily at first now 1 every other day to maintain. Now 2000 vitc daily. B12 2000. For maintenance, any lower and my b12 drops.high dose multi b, zinc, magnesium, selenium with vitamin e , turmeric ( reduction in inflammation since taking, CRP halved to 5.5) vitamin d 3000 again, took 1000 through summer...with k2. High Biotin but my nails are so bad again I may as well cut that cost. Take bio kult for gut, early days just given it by cfs sufferer. Evening primrose for breast pain, works, stop for a week takes couple of months to reduce breast pain again. And of course 2.25 THYROID S last thing at night, two hours after food with glass of water. But thank you x
First of all I am extremely sorry for the suffering you have and are still undergoing. I had no intention of dismissing your 'fibro' as hypo.
I am also sorry if you have taken my response that I dismiss fibro.
What I said was (trying to be helpful) that T3 might help or resolve.
Dr L said that people with fibro were thyroid hormone resistant (not hypo) and I doubt few experts know about this. Also he stated that these people only recovered by 'doses' of T3 which would knock others for six. I doubt many Endos are aware of thyroid hormone resistance.
So my dilemma now is, if I've read an article(s) that seems might be helpful is to not mention the possibility of what/could/may turn out to be helpful.
No fibro isn't 'thyroid - hypo' but according to Dr L, they are Thyroid Hormone Resistant, i.e. cells cannot accept T3 for some reason and that those people usually have to have very high doses to relieve which would knock someone else for six and few doctors are experts.
Dr L called his website 'Fibromyalgia Research Foundation 'exclusively for those patients.
Pain is distressing and disabling and someone close to me suffers daily so I know full well the difficulties, suffering and reliance on the medical profession to try to solve the problems and ease pain but cannot solve the severe disabilities which have occurred.
You also have my sympathy that despite your pain no doctors has resolved it for you or seem to not have eased your pain. In that case it is difficult for you to know whom to turn.
Regards.
Thank you Shaws trust me your help has been invaluable over the past 2 years and very very very much appreciated. I investigated tissue resistance and went on to t3 only last year, managed 11 weeks on the low dose my blood pressure would allow before having to stop and go back on NDT, when blood pressure dropped daily back to average 118/70. Now tosh very supressed m ft4 below range and unless its dropped ft3 up near top of range. 27 weeks and counting on this dose, and all recommended supplements to keep optimal.
26months plus and I must count my blessings for the things that have improved but no idea why others did ie nails grew, eyebrows grew but now awful again so worry the others will just go back to how they were again. Sorry, down and so tired not coping and didn't mean to upset you please forgive me. Just feel like giving uo
You didn't upset me as it was your upset that was of more concern.
As they say 'another day - another dawn'
Thanks, that means a lot. It was you and Clutter who tried to help me when I tried t3 only but even the two of you could offer no more advise when it skyrocketed my blood pressure. A mite emotional as it was my youngest sons wonderful wedding last weekend and I missed so much of it being stuck on the bed trying to meditate the pain down to a level I could cope with rather than pass out. I made it through the ceremony and wedding breakfast then just got back to my room before passing out then crying while everyone else had fun. It was, and is payback for overdoing things and not pacing and expected but aaaaaaarggghhh anyway. The rats are gnawing and the ants in hob nailed stilettos are scuttling about everywhere nibbling away while the jagged red hit poker twists through my hips and up my spine and my tail bone burns and stabs radiating through my hips to my shoulder blades and into my neck.... I could go on and on sorry. This is with everyday pain cocktail and flare oxy and they're barely softening the sharp point never mind rounding it. Hmmm felt good to get some of that out, sorry again. Off to meditate after I stop crying cuddling a dog. Self pity isn't pretty is it. Shoot, I am normally strong just feel I have lost the fight and no clue what to do. Em bogging off this time
Xxxxxxx hug
You are in so much pain. I wonder what a Functional Doctor would do to diagnose and make you better. Big hugs x
I am so sorry you were so unwell not to enjoy your son's wedding. I bet you were hoping for a miracle that you'd feel good on that day but am glad you were able to attend.
Believe it or not, when we feel upset/ill it is better to cry than not as it can relieve tension even though you feel awful.
When you tried T3 previously, maybe it was the fillers/binders in it that didn't agree with you.
Read the answer to question 5 - but am not sure if it will be of help.
toopoopedtoparticipate.com/...
You are very kind, I tried taking antihistamines an hour before t3 but no difference. My heart rte was fine, around 70bpm just blood pressure way to high and every attempt to increase beyond 25 just sent it higher. You tried to help me at the time but had to admit defeat. I switched back to NDT and after finding out about biotin interfering with test results my bloods dropped from over range to bottom of range so I got some hope back and with adrenal support raised dose gradually up. I upped again to 2 1/2 last night and may stay on it for 6 weeks and see if I CN afford to do even just basic test to see how much over range it puts me. Oh I don't know I am not thinking straight... lol... as if I ever do. I will leave you in peace.
Xx
Couldn't have worded it better myself ..take care ..big hugs
Although I would never presume to say you don't have Fibro, and its a very hard issue to get your head round, but there are definitely more things to try.
I have had a great looking thyroid panel many times. It's a guideline but it doesn't really mean anything. I've had identical blood tests on synthetics, and then later on NDT, and I can tell you I felt a million times better on NDT. For other people T3 works completely differently from the other formats, I believe the suggested treatment for those that have diagnosis of other conditions like Fibro is a very large dose of T3, administered all in on go, often at night.
These are things a doctor will never tell you, and you have to self medicate if you want to try. Personally I am diagnosed with CFS, altho I'm very skeptical about it. Overall I don't know what to think about these being separate conditions. But it's worth bearing in mind that some of the most influential doctors for this forum, like Dr Lowe and Dr Skinner believed that these were all the one same illness. And pretty much all the advice you'll get here for treating the more straightforward presentations of thyroid illness (the ones where it clearly shows up on a blood test, etc) comes from the work of these people. Often they were demonstrated on people with CFS or Fibro, not people with Hashimotos etc.
The other big thing that I should have mentioned is adrenal fatigue. I'm in the similar situation of having very good blood tests but not feeling better, and thyroid hormone resistance of some kind seems to be the issue. Getting adrenals in good order can improve this. It's whether the hormone gets transported into the cells, not about whether it's in the blood. This is an active transport mechanism. Unfortunately not very much that is very accessible written about it.
I self medicate on t3 all taken in one go ..I still have all my other conditions ..I'm also on a range of vitamins that I take every day .
I don't understand why its all put down to under medicated or untreated thyroid ? Its a real illness that came on during thyroid diagnosis
On Thyroid s since September 2015 after reading an article by Dr Lowe, since read as many as could find. As all I have ever done since the 1996 is slowly deteriorate till collapsing on way to work in October 2000 I was desperate enough to try anything. Full bloods at GP showed all fine but as I had been on biotin for years at hat time none of my early blood tests are worth a damn. With the phrase 'not a cure but reduces some symptoms stuck in my head I started on Thyroid S as I had nothing to lose at all.
Early tests showed overmedicating so reduced and felt worse even... heard about biotin giving false results so new tests and low and behold Ft3 at bottom of range not over the top so supporting my adrenal ( 24 hour test showed high lows but okay over all.) with holy basil I worked up to 2.25 NDT taken at night 2 hours after food with water. And at last ft3 genuinely 6.08 too range being 6.80. last year I tried t3 only but gives me high blood pressure even on low dose, 28 weeks later, nails gone again, eyebrows barely there again. Skin dry as blazes again. I could go on but there has never been any reduction in fibro or myofacial pain, never any thinning of fibro fog. Tender (hahahaha tender more like jagged red hit poker stabbing) points if anything worse. I sleep pain allowing and no constipation, no styles in eyes, they were permanent, no cold sores only occasional mouth ulcers rather than several all the time. No throat closed up so swallowing hard, all improvements on NDT. Sorry being boring, I do appreciate you trying to help x
I have fibromyalgia polymyalgia and chronic fatigue and of course and underactive thyroid , i have my thyroid bloods done every 4 or 5 months ..but I still have M E or chronic fatigue ?
Is your dose of T3 optimum? It is supposed to relieve pain.
I've been on T3 for many years and did not know T3 was meant to relieve pain.... thank you. I hope lola1956 replies.
It should relieve all clinical symptoms as it is the only Active Thyroid Hormone when on an optimum dose for us personally. Levo is inactive and has to convert to t3.
She has the two necklace wrinkles around her neck - the clinical diagnostic sign used by a Greek Doc I heard of for diagnosing a thyroid issue - so I didn't bother to read on ....
In a later pic - I think I see a goitre - ooops !
Its possible to have more than just a thyroid problem and I hoped on this site people would understand more
Oh, definitely a goitre, yes. That neck is screaming 'hypo'.
What a shame we can't make contact with her and show her all the replies on here
Erfa makes me even more hypo
Resting makes me worse - anyone else?
New B12 Film
Ashwagandha lowers TSH and makes me hypo?
Iodine-induced thyrotoxicosis in a woman with a multinodular goiter taking levothyroxine
