Im here again sadly and it will seem unbelievable i expect that hardly further on ……iv persevered hard to go nhs route to get tsh to a 1 but the levo does not bring me wellness - i got to 1.9 so they said all good and didnt listen to my symptoms, then the endo wrote he would trial Armour and when heard no more the gp wrote to him to prompt it, to be told then that its no longer available on nhs. ….can it be given on named person though👍🏼
To add insult he wrote me today he is having a Nuffield private clinic if able to cost it, many £100s in months! I feel set up
So im feeling very let down, my numbers arent hardly different to the outset, however iv felt better since taking the vits these my saving grace.
My bones have suffered density wise , had one break, and groin pain for ten yrs have now been offered surgery
But how much of this might be thyroid numbers, can anyone relate please? I do believe iv got spurs causing the discomfort so any thoughts on it please? My daughter concerns that im not fit enough for op as she has seen my muscle weakness and fatigue at times……cant understand the dips
Im in a viscous circle and even wonder if get surgery if it will lesson the fatigue a good deal as we know discomfort wears you down, has anyone had hip surgery, does the stiffness really go, do you get range back
I was born knocked kneed and foot inward maybe iv done ok as was tap dancing years!?
What to do
Iv done a panel
As you see the tsh way up and conversion not great. Vit d not bad folate and iron good and iv overdone b12
Tsh. 4.55
T3 4.5. 3.1 to 6.8. Taken after food
T4 19 12 to 22
Iv got some t3 iv been on levo 125 and felt dreadful but gave me tsh 1.9
But iv dropped it down to 100 i feel better on 125
Levo stopped the vertigo it did some good but now what please
I guess its t3 time foe sure, it scares me tbh, but do i go for op like this in 3 wks or take t3 now……..i couldnt have managed without tuk and couple of members at least i no longer crawl upstairs
TY
Jeppy🌸
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Thankyou Jazzw. I just feel i dont know what to do now. Lifes hard with stiff and pain but others are worse offYes. I didnt list the vits as ok. D could do a tab higher though but B12 was over range so will drop back a bit and folate high and ferratin half way
Others might well be worse off but that doesn’t mean that you should feel rubbish. xx
I’m seeing a lot these days that Vit D is good at 100-ish. I wouldn’t worry too much about B12 being over-range but if that and folate are high then yes, you can drop the doses a bit.
As for ferritin, it might be falsely elevated if you have inflammation. Just by way of example, in July, my ferritin was 127 and I thought, “Great!” I tested last week and it was 58… Not so great. My diet hasn’t changed much so I’d say the only reason for it dropping off is a drop in inflammation and I am in fact slightly deficient.
It’s a tricky one—you need a full iron panel to really know what’s going on. Don’t suppose you got a C reactive protein test did you?
In order to get the best results, all blood draw should be at the earliest possible, even if you have to make it weeks earlier. It is a fasting test but you can drink water and don't take levo or other thyroid hormones before blood draw but afterwards.
Yes. Thankyou. I know but was so keen to show him tsh etc i went asap which was lunchtime however hadnt taken levo and still 4.5 so guessing would have been higher first thingCalm today. It takes a lot for me to reach exasperation
Hey jeppy. Sorry to hear you’re having a bad time. I’m sorry this is going to costs £££’s, hopefully it will only be an initially. If you have T3, I’d only add it if you can continually source, otherwise what’s the point?
I’ve had groin pain for at least 19yrs 😞 it’s so painful at times.
My advice would be, if you can add T3, then do so. Have you had Vits/minerals tested before you started supplementing, this will give you the best idea of how you naturally build Vits/minerals. I’m looking into low B12 atm and what I gather is that I’ll have to stay of b12 for 4mths before I can get an accurate result. Then I’ll do other tests to see if I’m looking at low B12 or PA or MTHR ect.
High B12 result may just be from supplements and you’re not actually absorbing/ utilising it, which can also interfere with conversion from FT4 - FT3. Folate works with B12, they’re all co factors.
Low b12, ferritin, folate or thyroid disease can all make you feel rubbish. It’s about trying to find what is out of sink, fixing that and getting them all to work together.
Thankyou for reply. Yes michondria i know. Such wide subject You are what you absorb aye🤔. So does folate help b12 absorb.🧐Take magnesium q10 omega. Probiotics etc
Have you been told you would benefit new hip what does xray show?
Hey jeppy, yes folate has to be taken when getting B12 injections, otherwise you’re not getting the full benefit. I’m afraid I don’t know the amount off hand but I’m sure PA forums will know. Folate should be in the upper third of results. I’m just learning all about it atm.
All b complex because taking so much b12 only, throws them all out of balance but take a break from them after 4mths(?) incase if b6 toxicity or if you’ve had b6 toxicity symptoms then find a b complex without b6 in it.
There’s so much to research!!
Re hips. No new hips for me. My GP keeps sending me to a physio every year, every year, physio doesn’t work and then I loose the oomph to fo anything more about it. The actually pain is mostly my pubic bone. For 3 of my pregnancies I couldn’t really walk, or stand, or lay down. My pelvis felt like it was on fire. It’s better now but still goes on fire if I do too much
They don’t give me any clues about what’s going on with my pelvis 😩 I was ready to start addressing it and then Covid hit, so 18mths in, nothing has moved forward.
I had wondered if my ligaments were just too stretched, too much hormone, which is needed for birth but my hormones aren’t reliable! Lol so I guess it might be a bit like an elastic band that’s overstretched, it won’t go back to that lovely elastic state.
Only at outset i was near deficient in d and when i took it plus folate b12 i could walk upstairs again. Id been in scary place i had to crawl to bed so the vits were saviour yes. I cried for little things which finally stopped a good while ago and vertigo stopped so levo played a partMaybe good point to see him privately to swop over & then source. Or take t3 now with levo. I lean towards natural
My t4 was same number naturally at outset so why do i take t4? Does your own t4 kick in if just take t3?
Also does anyone know about named person. Iv got it in writing he was going to start me and also that some respond betterI havnt been told what to do and hes my endo, left in mid air 🙄
Yes NHS gave stopped all NDT and rarely prescribes T3. It’s an uphill battle so, if you have an endocrinologist who is willing to prescribe and you can afford to pay his fees then I’d jump at it.
There are many instances of patients T3 being withdrawn. I had been prescribed T3 privately, my private Endo wrote to my Gp to take over prescribing on NHS, I got one months supply before it was withdrawn because my CCG has Blacklisted it. Some members self source but I have no information on that.
It's right not to supplement with B12 before your GP checks that you do not have Pernicous Anaemia which can be serious if you have this condition. Your doctor should double-check for pernicious anaemia as it is also another autoimmune disease and we need B12 injections every few months as our stomach cannot absorbe B12 from food
It's all a big learning curve as doctors seem not to have a clue regarding clinical symptoms. Hopefully, you will soon begin to restore your health again. It's a wonderful feeling when our symptoms begin to resolve and we become symptom-free.
Thankyou Shaws. And AllI do feel ok compared to those dreadful yrs at the moment i dont have awful drowsy feeling but dont feel wellness as such i can remember that feeling but to be honest id like to understand why my t3 doesnt improve when iv got good t4 levels. and alwYs have even without levo🤔. Naybe this is the best i can be now, im keen to help bones as much as possible and in dilemma as hip surgery offered but i cant drop weight plus what if its not improved afterwards thats unbearable thought
If i just take t3 will i get ill as levo leaves system….will my t4 still come naturally. Iv asked docs why i take it when my own was high in range?? Ive just tried to follow rules of taking t4 to top but now achieved that tsh still 4
My body couldn't tolerate levothyroxine at all. It gave me terrible palpitations and cardiologist was thinking of putting an implant in my heart. The endcrinologist then added T3 to T4 and it made a huge difference.
I didn't consult cardiologist again and I stopped levo and from then on I took T3 alone.and it did restore my health I'm happy to say.
I know it is now very difficult to get a prescription for T3 but endocrinologists must be aware that some patients require it to restore their health. It seems to come down to cost.
In some countries T3 cost is reasonable so I have no clue why it is so expensive in the UK. The NHS is being ripped off. Also in other countries T3 is much cheaper than the UK.
really. It seems a postcode thing too. I dont think levo agrees sane, taken an age to try brands then build upAnd i do think the natural t4 t3 may be the key. Dr p said stick natural i could try adding metavive maybe and forget numbers . But realise the quantities are more random i think
Yes numbers seem a bit irrelevant especially if not converting well but when some say their joint pains go with taking t3 it does make me wonder. I know iv low density in two places, i even tried bio hormones from Prof Studd and my energy zoomed up and hip relaxed but then had to have awful monthly, he thinks all women should take it always!!
Gp has said he will give me nhs combined hrt but not as happy to try.
Frankly, I doubt many doctors can diagnose a patient through their clinical symptoms alone. Our old-fashioned doctors did and there were no blood tests then. They knew all clinical symptoms and diagnosed us by them alone.
Nowadays, they don't seem to even diagnose through a blood test. I know this for a fact and the response from the GP was ridiculous. I did say to him 'tha's not correct'.
Not one doctor could diagnose me, private or NHS. It was a first-aider who suggested it to me. (if you wish, click on my name and I've put my history to finally being diagnosed) Quite a number of members have had difficulties due to doctors not knowing any clinical symptoms. I realise they could be quite vague but they should be aware of clinical symptoms but seem not to have a clue.
I felt hugely better getting my T3 high in range. I found d it hard to take in small amounts but persevered (the second time of trying) and once I was taking 30 T3 in addition to 100 t4 began to feel better - and on 25 and now 32.5 lio my hips and back pain are all better. I would go for it. Split it as people say morning and night or even across the day. Experiment. Good luck.
For years I’d go to physios and back doctors and they’d do no good whatsoever (Stand on tiptoes. I can’t!!!) now can just about walk on top toes, balance better, no migraines, etc hair, nails, able to go out in the evenings… Endo says he’ll want to take my T3 away next visit! Why? Madness. I’ll self source as I can’t do without it.
Appreciate. Thankyou. 🥰 iv felt at brick wall and hosp wanting to do hip! Decision time. So. Doesnt endo give you the t3 on script. ? Its mad i know wanting to be under endo who doesnt do what Tuk advise
(Iv got a source for lio and got some here)
So im on 100 levo at mo. Any thoughts how to set off. Is it say 75 levo then 6 of t3 building up every 2 weeks
I cant put goot flat when stand up until i get going. Painful but not in pain walking just sharp mo ements. A lot of it is mental blocks toi that develop. The ooch before you move lol
I kept wondering if my t3 level were ok. That its just me and im one of those who hates meddling as not understanding bigger pic. Its not straight cut as when numbers out of the scale you k ow what i mean🧐.
Sounds like you’ve got lio so are all ready to start experimenting on getting yourself better.
When starting off I’d leave your Levo just as it is at 100 and just add 5 lio in the morning for a week then perhaps the next week add a further 5 in the afternoon or evening Then retest after 4-6 weeks., 24 hours after Levo and 12 after lio and on empty stomach.
As I said it made a big difference to how I felt getting T3 over 6.
Oh wow. All that discomfort gone!?I do need lio iv not got much. Any thoughts where pleaseMy t3 is 4 on same range as ypurs
In fact my tsh and t4 are exactly same before ever taking levo which i want to understand if can
Cant make sense of it and why is levo needed ? Why not take just lio
Thanks so much for this. Were you stiff. I can hardly tie a lace very painful and stiff after sitting and agony getting out of car so im left with dilemma do i postpone hip op, Im ok walking
You must be feeling desperate now as there's nowhere or no-one to turn to who will take notice of the clinical symptoms. I doubt the 'experts' know of any in the first place.
Don't give up as I am now well but couldn't on levothyroxine. I do not understand why some medical professionals also cannot understand that some people's bodies just cannot cope with artificial thyroid hormones and that our whole body, from head to toe needs T3 for us to function.
The theory is that levothyroxine should convert to T3 but it doesn't for some hypo people.
They've also withdrawn options i.e. NDTs (contains all of the hormones a healthy gland would do) or T4/T3 combination or T3 alone if still symptomatic.
I have lost heart. Worn down yes. Im concerned if to have hip op too. Will i magically improve on t3 maybe i should cancel. I hate messing them about they have been marvellous.
I feel natural may work for me rather than synthetic t3
Is it relatively easy to source now?
Iv got metavive has it risen in successes i wonder
He threatened it in March saying he’d review it in October - like I was just going to get better and not need the T3 somehow. No appointment received yet - guess I’ll fight it when I see him. Yes crazy.
How were your blood numbers? When you say hip and back better sounds amazing. Hip bone or groin? Also have you had any weight loss i cant get weight off
Groin, under bum and lady bits and at about sixteen points in my hips both sides. Couldn’t sit or lay down comfortably and no amount of stretching or pain killers helped.
Now my T3 is 6.3 where range is 3-1 up to 6.8. Tsh 0.01. T4 14.9 but I added a little more Levo now to bring it up a bit but not sure if necessary.
I did lose about 10 pounds actually but it will take lot of effort to lose more and I can’t quite face that yet.
I would certainly look into optimal vits aswe lose them easily being thyroid patients so it’s a constant check. Vit D I think you mentioned and my first thought was it wasn’t high enough. You could look at VIT D groups for advice on dosing etc but also make sure you get good quality vitamins as some are poor quality and not good value for money. I understand multi vits are best kept well away from as cheap and nasty. Also be aware that it can take a time to increase levels and it’s also recommended to start each new one two weeks after the last so if something upsets you it’s easier to work out which one.
Thanks lots. Yes i get good quality. Im increasi g D. Find it difficult to estimate how much more etc. I asked gp if can check but limited response. They dont get it I hoped one day i could have a good quality multi, confusing as want say 200 of selenium but will be in a multi min too, Iv bought Autoimmune and good health naturally in past. All about gut and mitochondria too for asorbtion. Lot to think about. My gp said i had great bloods considering but shocked when i said that isnt natural state. 😊
I used this calculator from Grass Roots to determine that to raise my blood level to 60 ng/mL, I needed to take 10,000 IU per day. Take a look at some of the research on that site. grassrootshealth.net/projec...
Appreciate reminders thanks lots. Yes will do. I was going to go t3 as GG showed me i was a bad converter but i knew i hadnt done the raising levo properly. Even though i had good t4. ( why give you more anyway). So iv wasted time there and probably poisoned system along the way. Frustrating journey.
The T3/T4 issues notwithstanding, an NHS consultant can work as a Private Consultant outside his contractual NHS time - but he cannot do what he is proposing. It’s a damned disgrace.
It’s a complex issue. Read the doc below and write to your MP.
I would suggest that he is deliberately asserting this in order to get more private patients on his bandwagon. All the more reason to write to your MP, hospital he works at in his NHS contract and anyone else you can think of including his dog.
I completely understand how you feel. The point is though that ‘they’ count on us being too tired to go on. Life’s tough but when you have health problems it’s intolerable. It’s hard to do, but, with help, you have to keep up the good fight. This fight isn’t hard to win because so many things are awry here. This Endo has to stand up and be counted.
Can you message me the area you live in Jeppy? Lunch calls before he changes his mind 🤣🤣
Im in Cheshire. But as Leighton shut its gate im at Chester Countess Mr Ewins. Having said that as soon as iv asked for explanations or support another endo rings me. I havent been physically like most i presume for over 2 yrs. iv had to wait a year for a phonecall so you just get on with life as we do best we can id go insane if ‘on it’ continuously
Another endo was horrified i did private bloods and wrote to tell gp🙄
…..one set of bloods disappeared. I phoned docs hospital and lab a few times. 7 wks later a wonderful set of results arrived with tsh 0.7. (Never🧐). Since then im reminded im well!!!!
…im sending these medichecks results tsh 4.6 after food in any caseBut unsure now of letter content. I may be outspoken at this point 🤦♀️But then would regret it probably
Tell Endo that if you had recovered your health with T3/T4 combination or T3 alone you wouldn't need to do private blood tests at all.
You can also state that NDTs (natural dessicated thyroid hormones) the very first replacement hormones from 1892 up to the present day, saved lives of thousands of patients who'd hypothyroidism. There were no blood tests then but the doctors knew all of the signs/symptoms and people were prescribed and recovered on NDTs.
Unfortunately NDTs were withdrawn in the UK by those 'specialists' who appear to be completely ignorant of the benefit to many patients and should resign their posts.
Ignorance is NOT bliss if they do not know how to restore patients' health. They do not deserve to be endocrinologists in the UK .
I think it would be a very good idea if Endos join this forum and see exactly how many patients are complaining. They wouldn't be if given the right thyroid hormone replacements that help to remove the clinical symptoms and patient can carry on with a normal, healthy , symptom-free life.
Absolutely. Iv thought similar. So well put. Thankyou. It is a disgrace but one by one they will say they are just following rules and guidelines. I imagine they may prioritise who they see as the worst cases 🤷♀️ I dont understand how its readily available in some areasHas the named person way been discontinued do you know..
We can be prescribed T3 if an endocrinologists agrees. Unfortunately many have decided not to do so as it is expensive in the UK.. I just do not understand that in Europe T3 can be sourced more cheaply than in the UK.
I have had my T3 restored due to me having a new diagnosis which is (and I'd never heard of this before) a "Polyander Autoimmune Disease No.3". I have alopecia, vitiligo pernicious anaemia and hypo,
It still depends on the CCG and whether an Endo is willing to trial you for 3 months at his hospital’s expense and then make a recommendation to your GP.
Can you tell me a little more about the "spurs", I was once told that I had the same thing years ago. I was a lot younger then and didn't have the pain I have now. I had no idea that it could be related to my thyroid problem.
Hi im sorry. Surgeon just remarked i had spurs so i asked very nicely if could just cut them off and smooth out🙃. Hink iits name of bone formationWhere is your pain are you to have surgery or is t it too bad? Has t3 helped?
What i gather is when hypo our bones joints can be affected too if autoimmune i suppose can be attacked inwardly. Why not post a question
I have pain in my lower back and pelvic area. I have a scoliosis and all sorts of things going on my spine. They diagnosed me with Alkylosing Spondylitis - but I didn't have the gene when they tested. Also have very bad hip and groin pain - I am waiting for another X-ray, I was told last time that I would eventually have to have an operation eve tually, but not ready yet. I had no idea it could all be linked to my thyroid. I am not on T3, I have never been offered it even when I asked if I could trial it as I have the DIO2 polymorphism. I live in Spain and is very frowned upon! Thanks for your response Jeppy.
Why frowned on 🧐. Im sorry you are in pain, yes its learning ongoing i have autoimmune and it seems we need to all heal our guts. Important. A lot stems from gut velieve it or not if the junctions arent close knit particles can leak out to confuse defence system which doesnt recognise it and goes into attack to look after you!!! Simply put lol
Thanks again for that, I do try with the gut - I eat gluten free, I am also vegetarian. Not as good with the sugar bur not that bad!! In am just away to Google bone spurs. 😂
Sorry sounded a bit rude. But came up easily! I didnt know either. Good luck. Yes im better gf. I slip up but i know if get bit of heart burn. Take course of probiotic. I hope im doing right. This is difficult bit trying to be own doc🙃😂. Greek yoghurt good. Theres kefir. Bone broth good for gut too. .
Will definitely try them. I know what you mean about being your own doctor. I would really like to try T3, as I said no chance of getting it through my doctor - but I would be too nervous to buy it myself!! What a wuss!
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