An article of interest re Thyroid issues and Fibromyalgia

Here is the link:

healthunlocked.com/fibromya...

I am glad that the article demonstrates the importance of checking thyroid issues while at the same time addresses the complexity of the conditions, instead of stating that all fibromyalgia is really undiagnosed hypothyroidism. Clearly it is much more complex than that and it's good that the article acknowledges fibromyalgia as a condition in its own right

38 Replies

oldestnewest
  • FoggyMoggy, With one or two notable exceptions I think most TUK members accept that fibromyalgia is a condition in its own right, as are CFS and ME. The experience of many thyroid patients is they're given a fibro/CFS/ME diagnosis by GPs and endocrinologists because their thyroid levels aren't abnormal, and when a hypothyroid diagnosis is eventually given, the symptoms improve markedly with thyroid replacement.

    I developed severe widespread muscle and bone pain, and breathing problems some months after thyroidectomy. Surgeon pinched and prodded a few muscle points, looked knowingly at endo, and they agreed between them Fibro and COPD. Lung function test was arranged but no treatment, follow up or advice about fibro.

    I had neither, and was having an adverse reaction to Levothyroxine, but it was seemingly preferable to make such 'diagnoses' outside of their speciality than to believe my problems were within their own specialities. I was told Levothyroxine didn't cause adverse effects, despite not having them before I was switched to Levothyroxine, and symptoms improving when I was taken off Levothyroxine for 4 weeks. 3 months after stopping Levothyroxine I had no pain, no breathing difficulty, and all the other symptoms cleared.

  • I'm glad about that. Unfortunately I've had several people who don't accept that Fibromyalgia is not caused by hypothyroid issues. While I appreciate the frustration of people who've been wrongly diagnosed with FM it is equally frustrating for people who don't have significant thyroid issues to account for their FM/ME or Chronic Fatigue.

  • FoggyMoggy, It is natural for people on a thyroid forum to assume fatigue and pain are caused by thyroid issues and to advise on that basis. If thyroid issues have been ruled out, or optimal thyroid replacement doesn't relieve fatigue and pain, they should accept that co-morbidities are causing issues. There's no reason why you should feel obliged to account for anything.

  • Fair enough. Thanks!

  • I'm disinclined to trust the article just because of spelling errors, the association of Graves with hypo and other minor "errors". The article could be made to feel far more authoritative with good editing. It's a shame when that happens. Doesn't seem to make the link between many conditions mentioned and autoimmunity. It just feels like the "man on the Clapham omnibus" making pronouncements - a shame, as some of the points made are good.

  • Hello Angel_of_the_North,

    Thank You for your comments

    Apologies for the minor errors in my post, however having Fibromyalgia and Fibro fog on occasion I think this can be easily excused.

    In regards to inaccurate information, please see the following article;

    Four Patients with hypothyroid Graves' disease.

    Starrenburg-Razenberg AJ1, Castro Cabezas M, Gan IM, Njo TL, Rietveld AP, Elte JW.

    ncbi.nlm.nih.gov/pubmed/204...

    Thank You for reading & I hope you are feeling well today.

    Best Wishes

    Emma :)

  • 'Hypothyroid Mom lists Fibromyalgia as one of 300 symptoms of Hypothyroidism.'

    This piece is from the Fibromyalgia Action forum site on Health Unlocked and it tells us that fibro is not a symptom of hypothyroidism.?

    I have read it before and it puzzled and concerned me. It is as though they do not want their members to find out there might be a cure out there. Rarely do they mention Thyroid or Hypothyroidism, often I have replied to their members to tell them them they might have Hypothyroidism, but mostly they do not write back, very odd ?

    On a few occasions I have been 'thanked.'

  • So Coastwalker, are you saying that FM is just undiagnosed hypothyroidism? This is why I posted the article as the FM forum looks at FM research in the wider context. Clutter's response above states that most people on here believe that FM and ME are conditions in their own right. So maybe the two questions are separate.

    Unfortunately I've had several people who don't accept that Fibromyalgia is not caused by hypothyroid issues. While I appreciate the frustration of people who've had their thyroid issues missed it is equally frustrating for people who don't have significant thyroid issues to account for their FM/ME or Chronic Fatigue. You seem to be one of those who thinks FM is undiagnosed hypothyroidism but for myself I have spent hours reading posts here, checking my bloods, not getting anywhere with GPs (yes, I appreciate that may be a problem with our lab ranges), reading STTM and making notes, phoning an endocrine nurse to discuss it all and just confusing myself into the bargain. The endocrine nurse said to me 'and there is fibromyalgia'. In other words, she was telling me not to dismiss that and that may well account for my symptoms while at the same time keeping an eye on my bloods and getting them done regularly. That seemed to me the most sensible advice. She also gave me a lot more advice on other matters relating to my bloods.

    What I'm saying is, that I think a little knowledge is a dangerous thing, or a confusing thing. Of course people with FM want a cure but maybe their experience, like mine, is that they have pursued the thyroid route as much as their energy will allow and have drawn a blank.

    MS is another case in point. There are huge overlaps between MS, Fibro and ME but nobody would suggest MS is a result of undiagnosed thyroid issues although the thyroid may be be associated. So why FM?

  • FoggyMoggy, perhaps because people are told by their doctors that the widespread muscle pain they are experiencing is fibromyagia and the fatigue they experience is CFS? Members are looking for explanations and ways of improving their symptoms, they aren't searching for information to dismiss the illnesses of others when they make connections between their thyroid dysfunction and other diagnoses and misdiagnoses.

  • Sorry, I've lost the thread now, Clutter. Who was dismissing? I was replying to Coastwalker's remarks that 'It is as though they do not want their members to find out there might be a cure out there. Rarely do they mention Thyroid or Hypothyroidism, often I have replied to their members to tell them them they might have Hypothyroidism, but mostly they do not write back, very odd ?

    On a few occasions I have been 'thanked.' ' I don't find that very respectful of the fibro forum admin who posted it to be helpful. The forums shouldn't be mutually exclusive but have crossover use. I belong to both forums but not sure how much crossover there is the other way....

  • Hi FoggyMoggy,

    I looked back at one of your older posts where you posted some blood results :

    healthunlocked.com/thyroidu...

    At the time your vitamin D was deficient, your B12 was low in range, and your ferritin was under the range.

    Have you fixed all these? Many people feel at their best when Vitamin D is around 100 nmol/L, B12 is about 1000 ng/L and ferritin is mid-range which, for the range you gave in that thread would be around 80 - 90 ug/L.

    Your FT4 was very low in range and your FT3 was under the range. Your FT3 at that time was worse than mine was before I started treating myself. (Although my TSH was over the range rather than low in range like yours - my pituitary obviously works better than yours.) Treating myself (in my case with T3) has been the best thing I've ever done for my health.

    I think you do have hypothyroidism. Whether you have fibromyalgia as well, I don't know. If you fixed all your nutrient levels and got them up to optimal, and treated your low thyroid hormone levels you would certainly feel a lot better than you did with those blood results a year ago. Most people feel better with FT4 in the top quarter of the range and FT3 at least in the top half or top third of the range. Your levels had a long way to go based on those old tests.

  • Hi humanbean

    Thanks for taking the trouble to look up my bloods. Since then these have been my results and they're by no means optimal but some of them are moving in the right direction.

    I'd need to look up the Vit D, Iron and B12 for the exact results but they are are low ends of normal but moving in right direction. I take iron supps every day but do not feel any diiferent. The best source of Vit D (the sun) does not make me feel any better any more though it did a couple of years ago, ie less fatigued, even though it is up. I would expect if it was moving in the right direction to notice small changes.

    Again my TSH in Feb this year was 0.87 - low but within range (last time it was 0.74)

    I had my T3 and T4 done privately again in May this year:

    My T3 was 4.1 (up from 3.8 a year before).( 3.9-6.9)

    My T4 was 15.1 (up from 12.3 a year before) (11-24).

    The main thing that I have been trying to explore is my pituitary based on low TSH and low T3. These are my cortisol results too:

    Aug 2014 648

    Feb 2015 652

    May 2015 649

    Range (175 – 600)

    This was flagged up with the GP I saw who spoke to the endocrinologist but in the end no action was taken as the numbers weren't thought to be high enough. He did offer me something so that I could suppress (can't remember what it is) overnight but he left it up to me and said I probably wouldn't sleep all night if I took whatever it was.

    So you see, I am not really getting any further and I also wrote down a lot of notes after talking to the endocrine nurse (this was a helpline) and she also explained to me (I've got it written down somewhere) about my hormone phases to do with my approaching the menopause and that certain ones would rise with the menopause and if they didn't this would be indicative of a pituitary problem. Sorry not explaining very well and I would have to go back to my notes but I did check them and it was consistent with menopause rather than pituitary.

  • How much vitamin D are you taking? I hope it is vitamin D3 you take.

    A personal anecdote - I wasn't terribly deficient in vit D but my levels actually dropped when I took 1000 iU per day, and rose very slowly on 3000 iU per day. GPs in the UK will often only prescribe 400 iU or 800 iU per day and if people are deficient or low in it, it really is a drop in the ocean that won't achieve much for many people.

    Your FT3 is still terrible, and your FT4 is still below mid-range. You would almost certainly feel better with thyroid meds of some kind.

    I can understand your need to investigate your pituitary under the circumstances. But I don't think you should let it stop you treating your thyroid anyway. As far as I'm aware the treatment for primary and secondary hypothyroidism is the same - thyroid meds - and you will almost certainly need either T3 only or NDT. And obviously in your case no doctor should use your TSH to monitor your thyroid treatment. If you started treating yourself your TSH may drop to zero almost immediately if your pituitary is not functioning properly, as seems to be the case. It won't mean that you are overdosed. You would need to monitor FT3, not TSH.

    (Actually, all of us on this forum would do better if we were monitored using FT3 rather than TSH...)

    As far as your cortisol is concerned, I'm not familiar with serum testing for it, or how to interpret such tests. I've done a 4-part saliva test for cortisol and that was high all day. I tried various supplements to try and lower it, but it never worked. I mentioned I take T3 only. I found I had to raise dose achingly slowly, and I kept on having to drop back for a few more weeks, before trying to raise again with 1/4 of a tablet. I'm sure the high cortisol is responsible for that. But the good thing is that my symptoms of high cortisol are reducing - particularly the high blood pressure, high heart rate and sweating buckets that happened to me every night for years at about 4am. My brain works pretty well now - certainly much better than it used to, although my memory is still a bit dodgy.

    As for sex hormones and the menopause... Sorry, can't help there. I've never measured mine, and wouldn't know what to do with the results if I did!

  • Hi Humanbean

    I only take the Vit D supplements when my bowels are OK. All Vit D supps make me constipated - yes all the ones I take are D3. I thought I had found some non-constipating ones at the health shop but when taking them every day they have the same effect. So I try to get my Vit D via sun with low factor sun cream and then only a smear. Obviously I need the supps int he winter but even taking them irregularly has seen my Vit D levels rise thought not nearly high enough, I agree. However there was an article (which was posted on here about the ineffectualness of taking Vit D). I will have bookmarked it somewhere. It's just there are so many supps to take here and there and in order to do it scientifically you have to introduce them one at a time if you're to stand any chance of seeing whether it was that supp or not. And that of course is assuming all other variables remain constant which we know they don't of course.

    Re T3, one GP and one nurse suggested trying it, but my usual GP hasn't. The nurse (consistent with what I've read on here) suggested the lowest dose is 25 mg. I have also read so many horror stories I won't go down the route of self-medicating. I think my usual GP is cautious because the one thing that is worse for me than fatigue, is in a permanent state of anxiety. She knows I get this and T3 could send this through the roof, so obviously taking any of this would need to be closely monitored.

  • The lowest dose being 25mcg must refer to levo/T4. On the basis of your tests results I would be surprised if you were able to convert sufficient T4 into T3 to make you feel better. Obviously the majority of people start on T4 and do okay on it, and it might be worth trying for a while, but obviously the choice is yours.

    Another personal anecdote - I have been a depressed, anxious and slightly paranoid individual for most of my life. But since I got my nutrients up to optimal levels and started self-medicating with T3 my problems of that nature have largely disappeared.

    I realise that too high a dose of T3 might cause the jitters and anxiety, but it disappears so quickly from the body that the problem fixes itself fairly quickly - just miss out a dose or two until the jitters and anxiety have reduced, and then re-start the T3 at a lower dose.

    But obviously you must do whatever makes you feel comfortable. Whatever you do in terms of treatment in the future, I hope it goes well. Good luck. :)

  • Thanks humanbean :)

    Yes I have seen forums where people have also self-medicated on T3. Obviously it is a question of finding the balance - the reported weight loss and increase in energy of course would be welcome, but too much the other way and I would be too anxious and jittery. That is how I was until gradually I've gone the other way but think earlier in life I was probably hyperthyroid. I still get panicky and anxious but am very scared of those symptoms becoming too severe. You say that I could miss a dose if that happened because it doesn't stay in the body although having had hypertension at a very young age I know only too well how long the aftereffects of that lasted which is why I remain a bit wary. I know I have been wary of taking meds before eg anti-depressants but then I was finally persuaded and they helped me. Having said that I think their long term use has contributed to some of my elevated readings like prolactin.

  • If you look on u tube at Dr David J Clark DC videos on why you still have hypothyroid symptoms when docs say bloods are normal, there are 23 reasons and high prolactin is no 4, so pretty high up. He explains that high levels suppress the pituitary which produces tsh. He says prolactin is also finely balanced with dopamine and progesterone. Check it out and go back to yr consultant. Wish you luck.

  • Hi thanks, mrsm.

    My GP said the high prolactin was as a result of antidepressants and therefore no action needed. I know, I don't understand it either

  • mmmm ok it might well be the result of the antidepressants but that doesn't mean that the prolactic high levels wont cause an action on the pituitary by themselves as a knock on effect. Maybe you can have a look at the you tube video i mentioned, you might be able to print a written version you can show him. Or maybe do a google search on prolatin + pituitary problems.

    Or not take the antidepressants, is that a possible option?

  • GP is a her...yes I have googled so many things. The a/depressants have really helped with anxiety. As always it's a trade-off, isn't it? I did start to reduce them last year and may well in the future. I was told that the A/D's helped with the sweats but can't say I've noticed. Maybe they would be worse if I came off them. I did get as far as halving them.

  • I always think it's like a minefield full of red herrings this thyroid business.

    Not sure if it'll help but I was getting lot's of hot sweats, then had to cut out caffeine (had been drinking increasing amounts of diet coke to stay awake but when hit 8 cans a day was getting heart palps) anyway heart went back to normal and hit sweats stopped !

    On another note I hvent sweated under arms since before TT ,it's saving me buying deoderant but doesn't seem right I suppose. I'm going to mention it at next appt.

    For myself I would be adverse to taking anti depressants as had them twice in long distant past and although had diff type each time (amitriptyline&Prozac) the side effects were both awful .

    All I can suggest is to keep digging and keep pressure on gp to help you. Maybe you need to see a good endo (if you email Louise warville, admin of TUK site I believe she has a list of recommended one's) Good luck x

  • Thanks. The problem with my sweats is that they are most likely to be hormonal as I'm hitting the change. I am trying lots of things but nothing working so far. Well, I thought the progesterone cream was a bit but nothing really. It's not underarm sweating, it's mainly under my boobs, down my back and on my face and neck, sometimes my legs. It is not hot it just feels cold and damp and have to keep changing clothes. HRT would probably help as in Oestrogen but I don't want to take it after having an averse reaction to the pill years ago.

    Drinking tea probably makes my sweats worse but it is the heat rather than the caffeine and actually may not be that at all. It just coincided when I get up I have tea but also may be the moving around that is causing it.

    I haven't taken amitriptyline although members of my family have with varying success. I was prescribed it once but didn't take it as I don't think it's a good idea to take 2 anti-depressants, even if the GP said it was safe. I've not taken Prozac either after my sister said it made her jittery. I take Paroxetine which is one of the best SSRI's for anxiety (rather than depression). I can't explain to people who've not suffered with anxiety just how you'd rather anything than anxiety as it all-consuming. The problem of course is the side effects and the eg weight gain. Most of that is probably due to the drug but also confounding that is menopause and possible thyroid interactions.

    I think I have a list of endos somewhere but one of the GPs at my surgery did consult one after my cortisol results but didn't seem that concerned so that's who I would be having to deal with. x

  • Yes I think menopause side effects and thyroid problems are like the chicken and the egg, which comes first!

    I'm going through menopause too for last 3 yrs now but giving up caffeine is the first thing I've tried that helped with the sweats but maybe I'm lucky. Btw m uhh first hot sweat was on the fronts if my thighs, I bbc wondered what was happening!

    I hope you find someone to help you x

  • Thanks :) x

  • Foggy Moggy.

    Hypothyroidism mimics B12 and vice versa. (both have almost identical symptoms.)

    B12 deficiency also gets confused with MS. (Dr. Chandy and B12 deficiency comes to mind.)

    Many have both B12 deficiency and Thyroid problems which run side by side.

    I write from my own experiences and what I have learnt from Thyroid Uk, with out Thyroid Uk, (and a couple of other sites on HU.) without theses forum sites, myself and other Family members would never have got well again. I in turn try to help others who want to help themselves,

    My own Fibromyalgia type, all over chronic pains, muscle aches, electric shocks and brain fog, cleared overnight, once optimally medicated, but only after I pushed my Doctor to 'up' my medication several times. I went by what my body told me.

    My Fibro type pains, muscle aches, electric shocks and brain fog were obviously a symptom of Hypothyroidism to me and also at one time my Fibromyalgia type pains were a symptom of both un diagnosed Hypothyroidism and also under treated Hypothyroidism. Many with low thyroid get overlooked or missed by Doctors.

    I also know there are many out there with diagnosed or undiagnosed Fibromyalgia that will never get themselves well or get an answer, which I mention in posts, but always best to rule Hypothyrodism out first.

    We are all different Foggy Moggy.

  • Coastwalker

    I appreciate that you are trying to help others because it has helped you and nobody would want to criticise you for that. I also agree there will be many people with fibro who also have thyroid issues and I agree it is important to rule out thyroid issues, absolutely. However there are also those who seem to have tried everything and so I wouldn't conclude that all fibromyalgia is really undiagnosed or under-treated hypothyroidism. I think the situation is more complex. People with MS, like people with Fibro and ME, all seem to have B12, Vit D and other deficiencies. I'm not familiar with Dr Chandy but yes, associated is the word, but that's all one can say. It maybe that the MS (likewise Fibro and ME) cause the B12 and Vit D deficiencies rather than vice versa. But it is likely to be much more complex so associated is the right description at this moment in time. In the case of MS, there are different types, so even that is complicated by whether it is Relapse-Remitting or PPMS which have different symptoms and progression.

    I am glad that you have managed to eliminate your symptoms and maybe one day a thyroid issue will be confirmed for myself and I will get the treatment but so far I have drawn a blank. My symptoms are also conflated with menopausal symptoms which makes it hard to disentangle what is that and what is FM

  • We are all different FoggyMoggy, no illness is straight forward either, some with fibro pains can be cured, some cannot, some get missed, others get misdiagnosed. Same happens to those with Thyroid/CFS,ME and MS and many other types of illnesses.

    My fibromyalgia type pains and menopause came around the same time, like happens to many woman I just assumed it was all down to menopause.

    Later I found my Vitamin B12 bloods were in the 'grey area' low and my vit D was Deficient, my Doctor gave me a low Vitamin D dose, but not enough. Many haven't a clue they are deficient in vitamins and minerals and then there is getting the dose levels just spot on, we all can differ.

    I must say I do agree with humanbean that your FT3 is 'very' low. My Mum and I would certainly not be well at your FT4 level either, (but again everyone is different.)

    T3 is also now used by some Doctors as a depression drug. (apparently, quite fast acting.)

    I feel you still have a good chance of getting yourself better FoggyMoggy, please don't give up just yet. My brain fog, tiredness, muscle aches and pains all lifted almost over night once on a much higher dose of Levothyroxine, though I have never got rid of my very cold hands and feet.

    Do ask your Doctor to go by your symptoms. (not bloods,) when needing to 'up' your thyroid medication. My Doctor could have easily kept me quite ill, I was at the point of thinking I had to give up working, that is how ill I was, never thought I had a chance of getting better.

    I now self medicate (NDT) I know the signs of being over medicated, this happened each time my meds were upped, but only lasted a day each time, then settled down, not nice being over medicated, was very jittery and energetic, (don't mind the energetic bit,) but soon goes by next day.

    Do google and watch the eye opening short video I mentioned before, Doctors could do with watching it too:- 'Dr Chandy and B12 Deficiency'

    (Two women misdiagnosed with MS and their amazing fast recovery's.)

    Coastwalker.

  • Hi Coastwalker

    I did read a very detailed article on B12 and the importance of it :) I asked my brother about it - he has had most things checked but he has MS. He has tried many things but MS as you probably know is to do with the myelin sheath in the brain. Still he takes lots of palliative supplements and has tried many drugs for the symptoms.

    No, I don't mind the energy at all, but do mind the jitters and often the two have come together with me, alas!

    I don't know what else to do re my GP - I have tried different ones in the surgery and as I say I tried the endocrine nurse on the phone. I am not on any thyroid meds although as I mentioned the nurse at the surgery, one GP and even the pharmacist (who gave me a review recently) mentioned taking thyroid meds (Levothyroxine probably). I am wondering whether my own GP is reluctant to give me it because she knows how bad my anxiety can get.

    Another thing, one of my family thought I have a goitre and another relative said this to me when I was young. I wondered if I am able to put a picture up and to see what people's opinions are. My neck has definitely gone bigger but that may be because of the general weight increase all over. I thought the enlarged thyroid showed further down the neck whereas mine seems to be thicker further up.

  • Apologies for my late reply FoggyMoggy,

    Sorry to hear about your Brother FM, I do not know much about MS, only that some MS patients have said they had a wrong diagnoses and later find their MS is down to a B12 Deficiency, (the 'low' - 'within range' grey area) Doctors seem to miss.

    I recall watching a real life video story about an American Doctor who was dying, his Doctor friends could not find out what was wrong with him, he had all sorts of tests done. I recall it was eventually down to luck he found out his vitamin B12 bloods were in the 'grey area' yet his Doctors said his B12 bloods were fine, OK, nothing wrong with his vitamin B12 bloods.

    Do get your brother to check out/Google 'Dr. Chandy and B12 Deficiency' FM.

    Knowing what I now know, I would want to make sure any close relative of mine with MS, definitively had MS and not a B12 Deficiency. I now do not rely on Doctors, I check my own bloods.

    What you can do Foggy Moggy is ask for a printout of your ALL your last bloods and their ranges, you might even be able to go online now and get them yourself as many can do in certain areas.

    You probably know you can self medicate with both NDT and T3

    T3 is now being used as an antidepressant, by some Doctors, apparently it works straight away, unlike other antidepressants.

    I now self medicate like many others do on here, (TUK,) because my Doctor did not want to go any higher with my Levothyroxine dose and I wanted to get myself well again, so I needed a higher dose which I was not going to get from my Doctor.

    Yes you MUST post up your goitre picture on here, I cannot understand why your Doctors are not connecting it all. Also pop up your latest thyroid and other blood results and ranges up too, even if you have done it already, to get a 'full story.'

    I feel there is a way forward for you Foggy Moggy, (remembering how I never thought I would ever get well again,) but you might have to push harder for it and 'learn' yourself, like many others on here have succeeded to do, they in turn are here to help others like you, so you are not on your own.

  • Hi CW

    I have passed on the link re B12 for my brother - thanks. I know he has investigated so many things but has never found that particular thing that has changed his symptoms dramatically, just things to help ease the symptoms. Plus he gets the magazine 'new pathways' which also has details of the latest research and trials. He has PPMS which is different than relapse-remit MS.

    I would be interested in getting my blood results from years ago - is that what you mean? I would like to see how my thyroid tests have changed over the years, even the TSH! But I avoided blood tests for several years because of the needle phobia. I had a bad experience in my late teens with one inexperienced nurse trying five times to get blood from a vein :(

    I will include pictures of my neck/goitre next time. I have some photos ready to upload to my computer in the next few days.

  • Hi Foggy Moggy,

    MS patients can be low in their B12 bloods and 'Myelin Sheath' and 'Low 'B12' bloods are linked, do get your Brother to research by Googling both together, just an idea.

    Also consider looking at Vitamin D to see if your Brother is vitamin D deficient or even just low in vitamin D, I know personally that a lack of Vitamin D can cause walking problems also stiffness and patients with MS, even Parkinsons often get walking problems and stiffness.

    My Dad had Parkinson's and had a gait, a gait is similar to having rickets which is also a lack of vitamin D. I now wonder, if legs gaiting and the stiffness part in MS and PS is partly down to a vitamin D deficiency. (though just my thoughts.)

    Sadly for my Dad I did not know about vitamin D deficiency back then also B12 supplementing might have helped his PS Dementia too.

    I too had a vitamin D Deficiency, I told my Doctor I felt I was walking differently, describing it as my legs gaiting and I could no longer bounce along as I usually did, very odd, I only went back to normal walking as soon as I went onto a good dose of vitamin D3 again an odd experience, My Doctor never helped me, but I was just glad I came across someone on Thyroid UK pointing me to more up to date vitamin D doses on the www.vitamindcouncil website.

    People who stay indoors a lot and do not get much sunshine can also be low in vitamin D. I was told to stay indoors by a skin specialist and keep covered up when outdoors due to having pre cancer spots removed, but by doing what a medic ordered me to do it actually caused me another medical problem, which could have become far worse.

    I still listen to Doctor's advice, but I also re check it out for myself and other family members as recently Doctors acting for my family have been getting far too much wrong.

    Apologies I forgot you had already posted up your last bloods and I can see you have a Low Thyroid (Free T4/FT3 problem as humanbean first mentioned. It is easy to self supplement, I was wary at first, but if you do it gently, it is so easy and you can have as much NDT or T3 as your body needs and not what the Doctor thinks you might need, which in my experience kept me under medicated, unwell, with Fibromyalgia type pains, brain fog and tiredness.

    Google this Foggy Moggy:-

    Fibromyalgia - A Medical Mystery Solved. (by Doctor John Lowe.)

    It is on the thyroid UK main site.

    Also FM, CFS and ME were less known about before the unreliable thyroid blood tests came about.

  • Hi CW

    Yes my brother is (or was) deficient in Vit D and has been taking supps for a long time. I did mention re B12 injections to him and he did thank me and has (as I thought) approached his old GP re B12 injections GP years ago but she wasn't very encouraging. Said that regular injections weren't a good thing to have unless necessary, and mentioned possible side effects. So he abandoned the idea. To be honest he finds most of these things aren't really worth pursuing anymore. None of them, to his knowledge, have ever worked for him. I don't wish to dismiss what you're saying at all, but PPMS isn't just about 'stiffness and aches'. It is to do with the myelin sheath and affects the spine which in turn means his mobility has deteriorated progressively (which is the second 'P' in PPMS). He has virtually no mobility now. I wish there was something that would reverse it for him but all the things he has tried and he has and continues to try a lot of things are palliative eg they help with spasms and fatigue. This is a combination of vitamins, supplements and prescription drugs.

    As for Vit D I do think it's more than that as I always get a fair (sensible) amount of sunshine in the summer because that is the best source of Vitamin D but in recent years it's not helped with my fatigue although my Vit D is moving in the right direction. I think there is also a problem with absorption. Somebody posted an article (can't remember whether it was here - brain fog!) but I've probably bookmarked it and it's to do with Vit D supps not being good at all.

    Yes I have heard all about John Lowe and seen some of his videos on here but I still don't buy that ALL cases of FM are really undiagnosed Thyroid issues although they may be in some cases. That's not to say I won't continue down that route. But on ME boards you'll find a wealth of information and dig deeper you will find a lot of research (much of it suppressed for political reasons) about ME (again I have many of these bookmarked somewhere.) Also FM did exist way before they changed the thyroid blood tests but went under different names eg Fibrositis.

  • So sorry to hear about what your Brother has been going through Foggy Moggy, did he find out years ago his B12 bloods were actually low ? If so his B12 bloods still might be low.?

    You can actually buy finger prick tests through the post now, Hubby has one ordered to test his Iron/ferritin levels, which his Doctor never did and which we think is important to rule out.

    Not sure if I asked before, but is your Brother on any Statins ?

    Vitamin D3 is very good for most of us as 85%+ of us are deficient in vitamin D, though you have to be wary of too much Calcium creeping in (I do not take any added calcium.) I take the D3 + K2.

    Marz posted up some good information today about how good K2 is. Though not saying everyone has to take Vit D3 or K2 as it might not agree with all.

    Yes do agree not everyone who has Fibro will get cured as many different types of fibro out there and it's severeness, then there are different medical ways of getting the fibro, I should imagine, we are all different, but having had chronic fibro type all over pains, brain fog, tiredness etc., for many months, which went almost overnight, I would advise others I come across with similar symptoms, needing help, to rule out Hypothyroidism (Low Thyroid) first, because I read daily on here, TUK, about so many people who get 'missed', or told their bloods are 'Fine, OK, nothing wrong with you, you are NORMAL' (I was one of them, but I was one of the lucky ones.)

    Do take another good look at your FT3 as it is almost at the very bottom of the range at 4.1 (3.9 - 6.9) only just above the 3.9. bottom level mark. No wonder you are not feeling great.

    Also remember to pop up your pictures of your neck/goitre as you said before for others to help you, do not give up.

    Good Luck Foggy Moggy.

  • Hi Coastwalker

    Thanks for your reply. I don't know when my brother had his B12 tested last, he doesn't like to talk about these things much as not much as helped him dramatically. He's not any statins, no. I'm sure he's looked into it. He is trying the drug Fampyra at the moment but don't know whether it's helped him or not or whether it's too early to say.

    He does take Vit D3 along with a lot of other supps. I find too much D3 (unless via the sun) and it makes me constipated! My GP thought it was the calcium and then prescribed me another lot without calcium but they too had warnings about constipation!

    I did talk to my GP about my T3 but looking at it in the round she didn't think was my problem because of my low TSH. She said it would be screaming out if that was the problem ie high, if that makes any sense. I did post up a picture of my neck a couple of days ago - you must have missed it! I had to do it in another browser as this one is too old!

    Anyway, thanks for your support...I will battle on, trying this and that! x

  • Hi FM,

    Your FT3 is almost rock bottom of range.

    I think your Doctor was suggesting you could become Hyper,, which is not your case. Doctors worry about the TSH being too low, my Doctor was.

    You still have room for your TSH to fall and your FT4 has room to go higher Foggy Moggy, both my Mum and I would be ill on those results, though we are all different.

    Your FT3 definitely needs looking at, but Doctors do not look at 'within range' bloods. LOW within range still cause problems.

    My Fibro pains only shifted once my TSH was at 0.05 and my FT4 up at around 17-18. If I fall back or under medicate, I know I will get my Fibro pains, tiredness and brain fog back.

    Have you considered self medicating, like I do ?

    Like I said before, I would still be ill if my Doctor had kept me on the lower amount they felt best for me, I read stories daily of Doctors not having a clue how to deal with Patients with Hypothyroidism (low thyroid)

    Your FT3 is Low, you too have 'Low Thyroid', if if it is still in range. FT3 should be in top third, yours is in the bottom third and almost out of range.

    Do try posting up another about your FT3. It might be worth a try, don't give up just yet.

    Good luck Foggy Moggy.

  • Hi Coastwalker

    I think my GP was just saying it wasn't a thyroid problem because my TSH was low and if I had low T3 and high TSH then she would think it was a thyroid problem!

    Even when my T3 was just below range it didn't get treated (that was the first time I had a private test). My GP said it was borderline as if that wasn't really a problem. Also when I spoke to Endocrine Nurse (phone line) I gave her all my results and she didn't seem concerned either, though she did offer a lot of advice.

    Yes I have thought of self-medicating but that scares me too. Usually I battle on until things get so bad that I have nothing to lose. This happened when I resisted taking anti-deprassants for many years and same thing when I resisted taking Imigran for migraines for months. Other drugs I have always resisted even when prescribed eg Amytriptilan.

    So I will see, not ruling anything out, CW. My main problem is fatigue, though I can live with it more than I can hyper symptoms!

    Take care

    Moggy

  • OK Foggy Moggy, I will leave you in peace, ;) :) but if you ever need me I am still here for you, take care, but please do not give up the fight. :)

    Coastwalker.

    X

  • Thanks kindly, Coastwalker. Much appreciated and thank you for your support :) x

You may also like...