Not been on here for a while as everything on hold due to lockdown. Diagnosed with fibromyalgia 11 years ago. Been hypothyroid for over 35 years. For last 3 years been getting worse, with no answers. Latest is all over tingling and burning all inside body, along with left sided head, neck and shoulder pain. Also suffered with chronic anxiety and stress for most of my life, but am obviously worse at the moment due to current situation, as I am also caring for DH with dementia, COPD and very poor mobility due to several problems including arthritis. Been reluctant to go to docs at present or even hospital, in view of no joy in the past and, worried being passed off again will make me worse. Any thoughts would be welcome.
Tingling and burning: Not been on here for a... - Thyroid UK
Tingling and burning
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ShelWhitt
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Hi - re-reading your posts of 4 months ago you had lots of advice concerning your LOW in range VitD - B12 and BELOW range T3. I am sure you know that T3 is the Active hormone and is needed in every cell of your body so when levels are so low there is not enough to go around to feed the brain - heart - gut - liver- kidneys - muscles and so on ! Rather like trying to spread a whole loaf with a teaspoon of butter ! It is the below range T3 that causes your symptoms accompanied by the low B12 and VitD.
Thanks Marz. I have understood everything you have said (I think) and it does appear that I need to up range T3, but I really don't know where to start with this, as if our doctors don't accept this and don't even do the testing, there is no way I can obtain it or know what dosage to take Also as we are no longer driving getting anywhere is almost impossible, and we have not been beyond the garden yet. DH is 81 with multiple health problems and is barely mobile and I am almost 78 and we are trying to avoid attending the health centre if we possibly can.
Yes we are the same ! I have been out just once this year socially having had a virulent virus for 6/8 weeks before lockdown. My OH is 81 and I am soon to be 74.
The difference between us is that I do not rely on doctors for our health. In one of our conversations I suggested you also had testing for your OH for thyroid/B12 etc. I don't expect that happened. Dementia can be linked to low thyroid - B12 - VitD etc. Our bodies should be looked at as a WHOLE - starting with gut.
Hubby and I both take T3 only and buy on-line. We take lots of supplements and very rarely eat food that is not fresh. If it doesn't grow - don't eat it !! We do not need other medications.
You have been short changed by Docs for 35 years as your dose of Levo is still FAR TOO LOW. I think this makes it difficult for you to accept - and yes I would find it difficult too.
First of all increase your T4 dose to 100 everyday and keep it there for 6/8 weeks and then re-test. A lab in Exeter will do a test for around £29 - Monitor My Health.
It is possible if you increase your dose it will increase your T3 level when it converts from T4/Levo.
PLEASE read your earlier posts and Repliies - all the answers are there.
Thanks Marz. I do understand what you say but am scared that if things go wrong without doctor's say so they would strike me off their list. I really don't need any more arguments at the moment.It is not about doubting you in any way, I am simply over anxious and insecure about everything at the moment. I also hear what you say about DH but am having difficulty getting him back to doctors again anyway. He is very stubborn and we spent the last two years concentrating on his health at the expense of my own. Now, his doctor for the past twenty has just retired , and he isn't happy about that. So another hurdle to negotiate. He has no concept of my problems, other than he knows I am in pain a lot and even day to day stuff I have to constantly repeat. He asked four times in the last half hour what we were having for lunch., and today is a good day. I am not making excuses, or making things difficult, it is simply a fact that things are difficult and I am having to deal with things the best I can.
Yes I appreciate how difficult things are for you - however you post a question seeking answers or suggestions and then you have an answer for everything that is suggested. Makes it very difficult to give you advice. Many people here have given up with responding but I am persevering. If you inform yourself with ALL the information you have been given then you should be able to have a ' discussion ' with your GP about what needs to happen. You do not need your GP to control you - you can sort your own supplements and increase your dose.
You are buying into Big Pharma and their money making policies - where there is a pill for every symptom when in fact a good dose of thyroid hormone would do the job. How come I am well after a lifetime of illness ? Easy - I have been self-medicating for over 6 years and following the advice given here ... I was diagnosed with far more serious conditions than Fibro 😷😷
I am sorry you feel as you do. It is not my intention to be obstructive. I do appreciate all your help but I don't think you do understand just how difficult I am finding things right now, or even over the last two years come to that, or you would not be making the comments you have, I am suffering with chronic anxiety, for starters , which began long before present events, have no support, and am feeling physically and mentally ill , not to mention caring for a difficult very unwell husband. I realise that none of this is your fault and that you are giving me the best advice you can but there also needs to be some empathy when telling me what I ought to do!Things are difficult enough without getting into disputes on here. You need to bear in mind that because things have worked for you they will not necessarily work for me, and then I would need backup, and I have to try and work things through as to how best to deal with things in my best interests. It is all very well taking your advice, but we are both reliant on the NHS for other medical conditions so need to retain a good report with our doctors if possible. I think it is already muddying waters because I am no longer accepting their advice without question. I accept that some 'advisers' may think I have a negative attitude, and think it is a waste of time bothering with me and my queries. That is their choice and their problem. They are not living my life. and if that is the case it seems they have the same attitude as some of the doctors. A closed mind unless you accept what they say without question. It is that attitude from the doctors which got me on to this site in the first place. I am pleased your self doctoring worked out for you and your husband, maybe one or both of you were mentally fit enough to filter the information and monitor the process and your progress at the time. You obviously did not need a plan B. Thanks again. Take care.
SlowDragonAdministrator
Previous post from 4 months ago
healthunlocked.com/thyroidu...
CRP HS 1.65. (<0-5)
Ferratin 97.4 ugl (13 - 150)R
Folate serum 2.19 ugl/L (>3.89)R * Low
Vit. B12 Active 53.2 pmol/L (>37.5)R * ?? low
Vit. D 50.7.nmol/L (50 -175)R * Borderline
Thyroid TSH 5.58 m/U/L (0.27 - 4.2)R * High
Free T3 2.93 pmol/L (3.1 - 6.8)R * Low
Free Thyroxine 16.5 pmol/L (12 - 22)R
Thyroglubulin Antibodies 14.2 kU/L (<115)R
Thyroid Peroxidase Antibodies 57.1 kU/L (<34)R * HIgh
Shows you were very under medicated
How much levothyroxine were you taking then?
Did you get 25mcg dose increase in levothyroxine
Have you been taking any vitamin supplements to improve extremely low B12 and folate
Vitamin D also far too low
Hi SlowDragon. Assume you have seen my response to Marz. I am aware that you are all being extremely helpful, giving your time and expertise. Please don't think I don't appreciate it, because I do. I am finding things extremely difficult to cope with right now - and I do know I am not alone - so I am having to take one day at a time and do what I can. I am on Levo 75mcg, 50mcg alternate days. I am taking 1000iu Vit D daily. Doc says I don't need B12 but I do have some in the house, 500ug; and folic acid 400ug, Do you think it would be helpful to take these? I also take Vit C occasionally. Obviously at the moment we can't get out at all. Thanks for your patience.
Suggest you start taking B12 and add folic acid after 2 weeks
Can you get GP to agree to put levothyroxine up to 75mcg every day
Email or post them copy of these blood test results
Than you Slow Dragon. As I said before they won't accept anyone else's test results. The needed to confirm them themselves. They only accepted I needed extra D3. Didn't agree with supplementing B12 or Folic acid. Magnesium was also on the low side o.8 mmol (0.7 - 1.0) but didn't recommend supplementing that either. Now things are relaxing a little maybe I will be able to book an appointment soon. I do have some extra tablets in stock so I could try taking 75mcg per day for a couple of weeks and see if things improve before I go back again, although I have always been reluctant to do things without the doc's say so up to now. Thanks again.
Not sure seeing your GP will improve matters. You have already stated they will not increase your dose or treat deficiencies - so I would save your energy. They are being negligent. The Health Service is being dramatically reformed - it will not improve. You are being prepared for a different system .... Ask Alexa ?
Suggest you start with the B12 ...then either add the folic acid or order a good quality vitamin B complex from Amazon (Igennus Super B is £9.99)
As soon as you can go see GP....or speak on phone to them...explain you did private blood test during Covid crisis as feeling so unwell. That the TSH can back as high at 5.58 and that Ft3 was below bottom of range
Could GP do thyroid testing including Ft3 ASAP
Don’t increase levothyroxine until had GP thyroid test .....assuming you can get one soon
As I said before they won't accept anyone else's test results. The needed to confirm them themselves. They only accepted I needed extra D3. Didn't agree with supplementing B12 or Folic acid. Magnesium was also on the low side o.8 mmol (0.7 - 1.0) but didn't recommend supplementing that either.
One thing I think you have to accept, without any reserve, is that doctors know nothing about nutrients. They don't learn about them in med school, so don't understand their importance. They only know about drugs, so as B12 and magnesium aren't drugs, they don't think they have any effect on anything.
One time, I was losing control of my neck muscles, couldn't hold my head up steadily, and was losing the use of my right arm. I did some research, and learnt about B12, so asked the doctor to test it. It came back too low, but my doctor said 'so what? It's only a vitamin.' Maybe only a vitamin, but it could have cost me my life, a long, slow, miserable death, losing control of my body limb by limb. I chose to ignore him and supplemented B12 by myself. And, slowly, everything went back to normal. I was lucky, because damage done by low B12 can be permanent. Even though it's JUST a vitamin.
Never, ever take nutritional advice from a doctor. They don't know what they're talking about, and just make it up as they go along - you can see that in their eyes! Always look at a doctor's eyes when you're talking to him, it will tell you a lot. If your blood tests tell you you're low/deficient in a nutrient, take that advice and supplement, don't even bother to ask a doctor - unless the result is under-range, in which case they have to do something.
As for magnesium, it that's low then you're probably very deficient. Magnesium blood tests are not worth doing, because of the way the body handles magnesium. It will always take it out of the cells to make sure there's enough in the blood. So, even if your result is over-range, you can still be deficient. If the result is low, then you're probably very deficient. But, you don't need your doctor's say-so or permission to supplement. Just order magnesium on-line - Amazon is good - and take it. You don't have to worry about over-dosing, excess will be excreted. But, optimising your magnesium could make you feel so much better. It is a very, very important mineral, and vit D can't work without it. So, just take some. 
Thank you Greygoose. I take on board what you say: much appreciate it and will begin supplementing straight away. My only concern has been quantities, how much of each,; whether it was OK to take several vitamins at the same time and I did wonder whether increasing one vitamin would have an effect of depleting another. Note: Vit D can't work with out magnesium. I do know there are several different types of magnesium, which do you recommend? Also, is it better to have a B complex than individual B12 and other individual B vits? Sorry to be a pain, but you obviously know a lot of detail. I am so glad for you that you managed to recover the use of your arm, that must have been devastating at the time. I can well understand why you lost faith in the docs and began medicating yourself. I wasn't aware that docs did not know about vitamins. I cannot believe how ignorant I am about medical issues, I have always had blind faith in docs until recently, I now realise I have a lot to learn. Thank you once again.
My only concern has been quantities, how much of each
That's not difficult, once you know - like most things. lol So, with B12, given your level, I would take 5000 mcg sublingual methylcobalamin - hope that's the one you've got - daily. I would take a couple of pots of that strength, to raise levels quickly, then go on to 1000 mcg as a maintenance dose.
whether it was OK to take several vitamins at the same time
There are rules for that, too. Sublingual B12 - or even a spray - can be taken at any time because it does not go into the stomach or the gut, and therefore is not a problem with other vits and mins. But, they all have their co-factors - like, as you said, vit D needs to be taken with magnesium in order to work efficiently.
With B 12, it needs all the other B vits to work efficiently. So, when you take B12, you would need to take a good B complex daily, too, to keep the Bs balanced. And, a good B complex contains methylfolate, rather than folic acid. So, that's the one to look for. Igennus do a good one, and you can find it on Amazon.
Now, this can get a bit complicated, so we'll leave it at B vitamins for the time being, and look at other nutrients as and when needed.
The most important thing to remember is that when you need to take several nutrients, don't start taking them all at the same time. Leave about two weeks between starting each one. So, you start on the B12, leave two weeks, then start taking the B complex. And, B complex can be taken with other vits and mins, but it has to be two hours away from thyroid hormone.
I believe you're already taking vit D, aren't you? Did anyone tell you to take that four hours away from thyroid hormone? You can take it with the B complex, but it has to be four hours away from your levo.
So, as we said, you need to take magnesium with your vit D. Your choice of magnesium depends on what you need it to do for you:
Magnesium citrate: mild laxative, best for constipation.
Magnesium taurate: best for cardiovascular health.
Magnesium malate: best for fatigue – helps make ATP energy.
Magnesium glycinate: most bioavailable and absorbable form, non-laxative.
Magnesium chloride: for detoxing the cells and tissues, aids kidney function and can boost a sluggish metabolism.
Magnesium carbonate: good for people suffering with indigestion and acid reflux as it contains antacid properties.
Worst forms of magnesium: oxide, sulphate, glutamate and aspartate.
So, chose your magnesium and start taking it two weeks after you start the B complex.
Magnesium also needs to be taken four hours away from your thyroid hormone, so take it at the same time as your vit D. Or, you might like to take it at bed-time, because it might make you feel sleepy.
I think that's enough about nutrients for tonight, don't you? One step at a time, I always say, and that's several steps in one go! So, if there's anything that's not quite clear, do ask me.
Sorry to be a pain, but you obviously know a lot of detail. I am so glad for you that you managed to recover the use of your arm, that must have been devastating at the time.
It was a difficult time, yes. At first, it only affected me when driving, and I thought there was something wrong with the steering. But, had the steering checked and was told it was fine. But, it was only when I had problems with my head bobbing about that I started to think that maybe the problem was with me! If only doctors checked you out as thoroughly as garage mechanics check cars!
I can well understand why you lost faith in the docs
Oh, I lost faith in them a long time before that! Like the time, in my teens, I went to see my GP with heavy, painful periods, and without any examination or blood tests, he told me I had to learn to live with it! And, when my uncle was 'diagnosed' with indigestion and died of a heart attack on the way to the hospital. And when my son was branded as a lazy skiver by several doctors and eye specialists, and after a two year search, and a lot of nagging and stamping of feet (on my part!) it was finally found - by accident! - that he had parasites in his eyelashes that were affecting his sight! They just can't be bothered to look into things if they're not immediately obvious. I could cite a lot of other examples, but I don't want to bore you.
I cannot believe how ignorant I am about medical issues, I have always had blind faith in docs until recently
In an ideal world, you would be able to have faith, and being ignorant would be just fine, because your doctor would have your best interests at heart. But, these days, it's all about money, not the patient. And, doctors just don't care. In fact, I have the impression that they regard patients as just a bloody nuisance! When I was a Saturday girl, in Woolworths, back in the 60s, we used to joke about how well we'd be able to run the store if it weren't for the damned customers! I fear that these days, as far as doctors are concerned, it's no-longer a joke. Sad, sad times.
Folic acid isn't the best way of raising folate. Methylfolate would be better.
chriskresser.com/folate-vs-...
Yes a good vitamin B complex would be better ...but as ShelWhitt has some folic acid already ....it’s probably better than not taking anything
Nothing to do with this subject, but just wondered if you had heard of Alpha lipolic acid and knew whether that helped with either thyroid or fibromyalgia problems. Someone asked me whether I had heard about it but I hadn't.
Nothing will help whilst you have LOW T3- low B12 - Low VitD. How will it help ?
5000 mcg B12 - 5000 iu's VitD and a good B Complex ... would be my suggestion !
Thanks Marz. Am on to this at least. Am increasing my D3 and on to B complex from today. See how this goes for starters!
How much VitD ? I suggested 5000 iu's above. Don't forget the Magnesium. You need B12 and a B Complex as there will not be enough B12 in a B Complex. I buy on Amazon. Which B Complex do you have and which VitD ?
The D3 I have been taking up to now is 1000 iu's.
The B12 I have is 500 ug,
The B complex is Activ-Max.
Thiamin 5mg ;
Riboflavin 1.4mg;
Niacin 16mg;
Vit B6 5mg;
Folic Acid 200 ug;
Vit B12 50 ug;
Biotin25 ug;
Pantothenic acid 6mg .
I intend to use these first and see how I go. Obviously I need to increase the dosages and introduce Magnesium and Folic Acid later.
The magnesium I have is:
Magnesium Malate 116.7 mg.
Malic acid 720 mg.
but I haven't taken any of those yet.
Nor any Folic acid 400ug.
Which I has purchased prior to lockdown.
I do also have in my cupboard:
Calcium (800mg) combined with
Vitamin D (5ug)
which I purchased earlier in the year, as a stop gap, when I couldn't get hold of any Vit D3. I haven't taken any as I did get the D3 shortly after.
When you read back the above, you will understand the difficulty I am having. Everything I am being told is brilliant, but complex. I would have had problems dealing and processing all this when my brain was fully functioning, let alone now! With a permanent migraine. For now I am going to have to adapt and manage with what I have, until I feel able to do comparisons and maybe reorder some items. Thanks again, as usual a very comprehensive and detailed response.
I do also have in my cupboard:
Calcium (800mg) combined with
Vitamin D (5ug)
Don't take that. You don't want all that calcium. I will explain why if you wish, but don't want to complicate things. Just don't take it, it's a bad thing to take.
in reply to Marz
Can you confirm that gluten may be a hindrance to thyroid disease? Surprisingly few posts on how gluten can affect the gut the brain and other organs. Thank you for great information on supplements.
Marz in reply to
Dr Tom O'Bryan is great on gluten and the gut health
Dr Datiz Kharrazian is great on the thyroid - gut - gluten and brain. Websites in their names - Newsletters - books .. Shout if you need more help 🌻
in reply to Marz
Will look them up as think most folk see the doctor even consultant and tests for gluten intolerance are not mentioned.
Read interesting article about coffee which may affect the thyroid medication so the T 3 wont convert to from T4. TlAn article from the Bay area Endocrinology titled
"Coffee and a thyroid medication". Indicates coffee impacts diversion if T4 to T3 thyroid hormones.
Another website gives general information about coffee and caffeine for women who have thyroid problems. Cross reactive foods have gluten similar substances such as casein in milk , chocolate,corn(maize) coffee and almost all grains because their protein structures are similar.
Coffee impacts conversion of thyroid hormones and need to take it an hour before having coffee. Coffee is linked to women's hormones and can further inhibits T3 conversion. An endocrinologist will not give this information as it is not known in the UK.
www://hypothyroidmom.com/11-ways-coffee-can-impact-your-thyroid
This information is over 50 years too late! Ha!
Marz in reply to
I would start your own post for further discussion Hidden so the thread does not become too confusing - both for ShelWhitt and other readers.
in reply to Marz
A good idea but you have confirmed that gluten is implicated in some people with thyroid disease. What is not recognised is that similar gluten proteins are in grains such as maize and may be in rice. Also in commercial products with milk chocolate and coffee.
This research is not readily available but is linked to celiac disease. Do you know of any research which links celiac with thyroid disease ? As Shellwhitt has high TSH and high thyroid perioxidase antigens, could the latter be linked to gluten intolerance? Confused!
powerofpositivity.com/5-def...
Article indicates 5 deficiencies can cause this described as peripheral neuropathy .These are calcium and magnesium disrupting nerve function. Excess coffee tea and chocolate with caffeine and soda speed up the the loss of magnesium through kidney excretion.Vitamin D deficiency can disrupt absorption of dietary calcium. Vitamin B12 and folate deficiency can affect joints numbness and tingling. Folate or folic acid vitamin b9 works with B12 to give energy and prevent anaemia.
Vitamin E found in coconut oil helps numbness and tingling sensations in hands and feet.
Can cause anaemia. From personal experience have found tea with tannins and caffeine can affect the blood increasing fatigue. Most teas are roasted so may raise carbon levels. My cups were always black till I stopped tea drinking. If you have internal itching this might be linked with the liver. As you have had fibromyalgia and thyroid problems this might be linked to gluten in food. Most grains contain gluten rye wheat barley . Barley is found in malt in beer soft drinks breads and cakes. Wheat can be an irritant even if gluten free. Guess you could send off for gluten and grain test on line. If you go gluten free it may help both fibromyalgia and the thyroid . Good articles to be found by pharmacists Isabella Wentz and Suzy Cohen. USA.
Tests for gluten kits fingerprick tests can be found from Lloyd's online 20 pounds. Diabetes and multiple sclerosis can't give these symptoms too. Take care.
ShelWhitt in reply to
Yet another complex and detailed reply, which I do appreciate, but if you have read my other responses you will understand that I need to have the time and mental ability to process it all. Unfortunately at the moment I am struggling with both, but will come back to it when I can. Thank you for taking the time and trouble to respond. I am finding it all overwhelming and there seems to be some conflicting opinions which obviously doesn't make things any easier. Thank you for your reply.
in reply to ShelWhitt
Know what you mean. Have been piecing together my own health problems and three years on am still finding puzzle pieces. Cutting out gluten for most people is a non started as they know they like their diet and don't want to cut out things as it is too complicated. Just know diabetes and IBS have been transformed by cutting grains so I can travel in a car for several hours. Hope you find the answers in time.
Hi - have been reading about your concerns regarding your poorly head - on the Fibro Forum. Before I was well treated with my thyroid I used to have several scabs in my hair on top of my head. They used to itch and bleed ! They would return again and again. Now I am injecting B12 weekly I no longer have the problem - it can be low B12 as well as low T3. Hope you soon find an answer ... and feel well.
Hi Marz. Yes, this is my latest problem. As you might have gathered all my info gathering regarding trying to sort my thyroid problems months ago, was put on hold around the time of covid lockdown. I know I tried the patience of some of you trying to help me, but I really was overwhelmed ; struggling to cope . You would not believe the things going wrong, constantly, day after day; problems needing solving and sorting out; I was beginning to get paranoid, spending hours and hours on the phone,. Everything apart from day to day stuff got shoved onto the back burner. I know in an ideal world, when I felt well ??? I would have just got on with things and dealt with them; or if it had just been one thing at a time, no sweat, but it wasn't. All whilst dealing with my DH, whilst feeling very unwell myself; constant pain, spirelling brain fog and anxiety going through the roof. I really cannot go into it all, but I really felt I was going mad at times, I eventually calmed down a little bit after about a month into lockdown, but decided I didn't want to get into the health rat race of doctors and hospitals, whilst the virus was raging. I really needed a bit of 'calm' to try and get myself back together. Anyway you have picked up on my latest problem. I have had the scab for about 2 years. Doc said nothing to worry about as she thought it was excema. I only asked again just after Xmas, but in August the scab kept coming off - my hairdresser commented (when I finally got an appointment) and my eldest daughter said I should get it checked out (she had two melanomas removed last year) , so we are now where we are and I am now trying to deal with one thing at a time! I hope you are managing to stay safe and sane during these manic times!
Good to hear from you. You cope very well with everything and taking one step at a time makes sense. You articulate well so the brain fog is only superficial !! Coping with so many things can be overwhelming at times - we need space to breathe ! Hope your appointment goes well and good your daughter is there for support.
We are both fine and it's a month since I had cataract surgery - hoping to have the other eye done quickly in case we are under house arrest again ! 🌻
Glad to hear you are coping OK. My friend had cataract surgery at the end of last year and she is pleased with the results. Not that you want to hear it, but here goes anyway. My biggest problem at the moment seems to be Irritable bowel/Interstitial cystitis (if that is what it is). Had complete hysterectomy for endometriosis 35 years ago after years of suffering heavy and painful periods and low right sided abdominal pain, which I thought would sort it, but no. I still have it. I have had all sorts of tests since, including suspected appendicitis (in hospital for five days and then discharged). Told it was inflammation. Also labelled with irritable bowel. I tend to disagree - what's new! I think it could be some endo. left behind that has attached to my bowel or bladder, or adhesions from the op. or maybe even a kink in my bowel. But whatever, it is just another problem with no answers! Now having recently 'discovered' interstitial cystitis, I think that is a possibility, as the pain is constant and like a very bad cystitis or ureter infection . I have had tests, admitted a while ago now, colonoscopy and cystoscopy, but told all clear. Saw doc more recently, last November and then just before lockdown as was having another flair with just about everything (as you are well aware) querying a kidney infection and was treated with antibiotics - but here we go again, Still have the problem. I think the frustration of the constant, chronic pain, plus the stubborness of not accepting that there isn't a cure, and trying to find answers myself, added to the fact that no one seems to believe it is as bad as it is, and they can't do anything anyway, makes you feel so alone most of the time. I do understand my family thinking I am a hypochondriac and should get a grip and that is the sad part, as I am virtually a workaholic and have been fighting these problems most of my married life with little/no support. This has probably been my downfall as my 'kids' are of the opinion that if you can do things on one day, you can do them everyday, so where is the problem, Rant over. Sorry to burden you, yet again Marz, but hope you don't mind. It was good to hear from you. Take care and stay safe.
Yes I hear you loud and clear 🌻 During my 15 years of having the time to read and read about my own health issues - gut TB/ Crohns/Hashimotos - I soon realised I had to take control of my own health.
As I have mentioned before many of your symptoms could be improved with a higher T3 level. Yours is very low in the range. Also optimal levels of B12 - Folate - Ferritin - VitD will help your Levo work better in the body.
The body can heal itself when given the correct fuel (T3) or enough T4. All our cells have a receptor for T3 so when the level is low there is not enough to go around ! The receptors are there for a reason - to create energy within the cells of the brain/heart/liver/kidneys/ gut and so on ....
SlowDragonAdministrator
Suggest you reread this post
Make sure you are still taking daily vitamins
Do you take your levothyroxine in morning or at bedtime?
Vitamin supplements after breakfast
Igennus B complex - one tablet a day
(remember to stop taking this a week before ALL BLOOD TESTS as biotin in it might falsely affect test results)
amazon.co.uk/Super-B-Comple...
Sublingual B12 - Jarrow 1000mg
amazon.co.uk/Jarrow-Methylc...
Vitamin D with vitamin K2 mouth spray - at least 2 sprays.
You may need higher number. Important to test vitamin D at least annually, ideally twice year.
amazon.co.uk/BetterYou-Dlux...
Magnesium supplements need to be taken in afternoon or evening (good for improving sleep) Magnesium must be four hours away from levothyroxine.
Looking for vitamin levels to be OPTIMAL
Vitamin D at least around 80nmol and around 100nmol maybe better
Serum B12 (NHS test) at least over 500
Active B12 (medichecks test) at least over 70
Folate at least half way through range
Thyroid results
Looking to increase dose of levothyroxine slowly upwards in 25mcg steps until
TSH is under 2
(many people will have TSH well under one when adequately treated)
Ft4 at least in top third of range
Ft3 at least 50% through range and possibly higher
Levothyroxine is Ft4 and we need GOOD vitamin levels to help convert Ft4 into Ft3
Come back with new post once you get results from yesterday’s blood test
Hopefully this test was done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?
Hi Slow Dragon. How come you know so much about thyroid function, malfunctions; drugs and vitamins. Is it down to self research or do you have a back ground and training in chemistry; and are you giving advice based on any tests, trials or testimonials from other sufferers you have helped/advised, or purely on what you yourself have experienced? I ask because you are so confident you know so much more than the doctors, which I don't doubt for a moment, as I have had much more detailed information than I could ever have found out for myself. I am just curious by nature.
I take my levothyroxine at approx 4.30 am each morning , 50 mcg/75 mcg alt days, which is when I get up. I am on the same dose now as I was in February, as when they retested me after I had had private testing (which they didn't accept) my results came back - as they said - in the normal range, so no need to change. I will hopefully see what my latest tests reveal in a few days.
Serum TSH 3.32. mu/L (0.38 - 5.5)
Serum T4 level 16. pmol/L (10 - 18.7)
I never miss taking my levothyroxine.
I take one 1000 iu Vit D each day after breakfast, with an occasional 100mg Vit C.
I am not on a gluten free diet as i do not think I would be able to sustain it. Unless of course I eventually discovered it was the only way to get well.
My latest test was taken before I had anything to eat or drink.
For over 20 years I was on only levothyroxine, before joining forum (and, particularly after menopause, increasingly unwell with each passing year)
Full story on my profile
Only finally made full recovery with help and knowledge on here.....plus masses of my own research
Any leading thyroid specialist endocrinologist will advise that thyroid patients on levothyroxine must have TSH under 2.
Eg TSH should be under 2
gponline.com/endocrinology-...
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
England Liothyronine (T3) guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking Levo thyroxine
Also to test vitamin D, folate, B12 and ferritin
sps.nhs.uk/wp-content/uploa...
Aim is to bring a TSH under 2.5
gp-update.co.uk/SM4/Mutable...
Many people when adequately treated on levothyroxine will have TSH under one
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
(That’s Ft3 at 58% minimum through range)
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email at
tukadmin@thyroiduk.org
Personally my endocrinologist advised my GP to maintain levothyroxine dose to ALWAYS keep my TSH below 0.5.
Now I am on levothyroxine plus T3, TSH is even lower than that. But Ft3 and Ft4 within range. (T3 almost always suppresses TSH)
But the key for many of us is to ALSO maintain OPTIMAL Vitamin levels. Levothyroxine and T3 need GOOD vitamin levels for levothyroxine to work
NHS only tests and treats deficiencies
That’s not the same as OPTIMAL
NHS will prescribe vitamin D if under 50nmol
(Increasing CCG areas will prescribe if under 75nmol - due to Covid link to low vitamin D )
Optimal vitamin D is at least around 80nmol
Vitamin D council advises 100-150nmol
B12 - range is far too wide - typically 180-680
NHS rarely treats B12 unless under 200
Many people on levothyroxine have low B12 symptoms if B12 under 550
Folate similar...we frequently need folate at least 50% through range
Are there actually any endocrinologists in the UK who do know anything about hypothyroidism. Could you recommend any. Just been reading a report of someone's experience with one who obviously knew nothing, and she ended up in tears.What a mess. Is there any wonder we are in such a mess with Covid. I don't know about our great NHS, I'm beginning to think it is all propoganda. Unless you have something straightforward, with an instruction book, you have little or no chance!And there is no popint in challenging anthing either!
Yes
There are a few
Majority of endocrinologists are diabetes specialists
You need thyroid specialist endocrinologist
Roughly where in the U.K. are you?
Many of them are currently doing consultations via zoom
Private consultation typically £250 initially and important to get FULL thyroid and vitamin testing done shortly before consultation
Cheaper on follow up
Email Thyroid UK for list of recommend thyroid specialist endocrinologists.......NHS and Private
tukadmin@thyroiduk.org
Come back with new post once you get NHS results this week
First step is to get your recent test results
If TSH is over 2 you need 25mcg dose increase in levothyroxine
Work on improving low vitamin levels too
Bloods will need retesting 6-8 weeks after EACH dose increase in levothyroxine
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