hashimotos

i have for the last two years been suffering from arthritis symptoms and was told i have fybromayalgia , after appointment at rheumy they have requested a blood test to check my thyroid function, could this be to check if it is hashimotos i had never heard of it before. I had graves disease 6 yrs ago and had a thyroidectomy i now take 200mg of thyroxine a day .

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  • If you've had a thyroidectomy, I doubt if they would test you for Hasimoto's because it wouldn't make any difference. Hashimoto's attacks the thyroid gland, but if you haven't got one... 'Thyroid function' is a bit of a misnomer, too, if you haven't got one! lol They're probably just checking your hormone levels to see if your dose is high enough or whatever. If fibromyalgia is suspected then it probably isn't.

    Hugs, Grey

  • Sorry Grey, can't you have fibromyalgia if you don't have a thyroid?( I know cause of fibro has not been established fully) I am asking because I was diagnosed and assumed it was due to hypothyroidism.

    Roslinxx

  • Of course you can, I didn't say you couldn't. I said that she probably has fibro because her dose isn't high enough. Nothing to do with the gland itself.

    I said there was no point in testing for Hashi's if you haven't got a thyroid because it wouldn't make any difference to the treatment.

    Sorry if I wasn't very clear there.

  • of course, just thought that you had heard something I hadn't.

    Roslinxx

  • Roslin, see my reply to she33 below.

  • sorry i never ment thyroid funcion i ment levels, and i have never heard that having low levels can cause fibro. I always thought there was a link to both but never found any evidence. I never really give my thyroid or lack of one a second thought and dont understand what all the t3 and tsh is all about i just take my levo and get on with it, i found this site whilst on the fibro one and was very interested to read so much about how having hypothyroidism can effect u i felt after mine was gone i was better but not so it seems.

  • The only thing that makes us better is having enough thyroid hormone in us to support all our funcitons. And that is often the problem when you have a TT, the doctors won't give you enough replacement hormone.

    A few basics: TSH (Thyroid Stimulating Hormone) is a pituitary hormone that stimulates the thyroid gland to make thyroid hormone. There are four thyroid hormones: T4, T3, T2, T1. The difference is the number of iodine molecules they contain, but they all have different functions in the body.

    Usually, when one is hypo for whatever reason, one is given just the T4. The body is supposed to convert it into the other hormones. But problems arise when someone has difficulty converting - which a lot of hypos do. Then, in an ideal world, one should be given T3. But that doesn't always happen. So, the person is left with a lot of unresolved symptoms.

    Before the 60s, doctors used to treat by symptoms and hypos were relatively well. But then darling Big Pharma invented the TSH test and told doctors it was THE test to diagnose and treat hypothyroidism. And the amazing thing is, doctors believed them! But the trouble is, the TSH is slow to respond and doesn't reflect actual thyroid status. And once you are on thyroid hormone replacement, the link with the pituitary is broken and the TSH becomes useless. But doctors continue to use it to diagnose and treat, thereby leaving a lot of people suffering with various degrees of symptoms.

    Rather than back down and admit that the TSH test didn't work, the medical community went on to invent several new 'diseases' to explain the continuing symptoms : fibromyalgia, cfs, ibs, etc. But these are not 'diseases', they are syndromes. And a syndrome is nothing more than a collection of unidentified symptoms.

    So, you have people suffering from un/under treated hypo with lots of symptoms, and you have a handy new 'disease' that - oh, let me see - yes, has exactly the same symptoms!!! What a coincidence! So now doctors would rather label you with a vague 'disease' - with no diagnostic test, mark you, no cure and no treatment - rather than treat your hypo correctly.

    But make no mistake, I'm not saying that these new 'diseases' can only be caused by hypo. They could be caused by any number of things that the doctor can't be bothered to investigate. But when you already have a diagnosis of hypo, isn't it more likely that the hypo is to blame rather than anything else? If you have thirty symptoms, it's far more logical to assume that you have one disease causing all thirty symptoms than thirty diseases with one symptom each. But even so, you have people with known hypothyroidism diagnosed with depression, ibs, bi-polar, fibro, etc etc etc. It's sloppy doctoring! And all these new 'diseases' are just get-out-of-jail-free cards for lazy doctors.

    I know a lot of people will disagree with this, especially on your fibro site - peopel seem to cling on to their diagnosis of fibro for dear life - but that's the way I see it, and I'm not alone, I'm in good company with the late Dr Lowe and lots of other well-known thyroid doctors.

    Anyway, I hope this helps. But I've just realised! I didn't answer what I think was your main question! What is Hashimoto's? lol Hashimoto's is an autoimmune disease where the immune system mistakenly attacks the thyroid and destroys it, causing hypothyroidism. Eventually, like me, you end up with no thyroid because of it. Not anything you have to worry about now! lol

    Hugs, Grey

  • are there any online articles by Dr Lowe to say this fibro-thyroid link? I'd be interested in reading them.

    sandra.

  • Oh, I'm sure there are but I don't have any links. Perhaps if you post a seperate question someone will post some.

    Grey

  • Hi Grey, are you sure that Hashimoto's only attacks the thyroid? I have a feeling that I've read somewhere that it can attack the eyes and few other organs that like/need iodine. I'm really interested in your thoughts on the TSH: "But the trouble is, the TSH is slow to respond and doesn't reflect actual thyroid status. And once you are on thyroid hormone replacement, the link with the pituitary is broken and the TSH becomes useless." This is what I'm really worried about. I had a slightly high TSH and slightly low Free T4 and Free T3 AND HASHIMOTO'S and symptoms and went on 25mg Levothyroxine 5 months, now on 50mg Levothyroxine for 5 months. I would have preferred to have got rid of the Hashimoto's and not be on anything but healthy supplements. Any ideas how I can do that? Thanks :)

  • As far as I know, Hashimoto's only attacks the thyroid. However, Graves, another autoimmune disease that involves the thyroid also attacks the eyes. As for other organs that need iodine, I'm not sure what they might be. I've always been told that only the thyroid needs iodine, and it needs it to make thyroid hormone.

    As things stand, there is no way to get rid of Hashimoto's. If there were, I'm sure we'd all be all over it! lol Some people find that their antibodies decrease when they go gluten free but I've never heard of anyone getting rid of them entirely.

    But why do you think that levo isn't 'healthy'? It's just T4 hormone (apart from the fillers and stuff, but you get them in all supplements). It is just replacing the hormone that your thyroid can no-longer make. It isn't a drug - although a lot of people persist in calling it one. It is synthetic, of course, but a lot of people do very well on it.

  • Thanks :) I want my body to work for itself and not get too dependent on a drug that might become difficult to get because so many people will be on it and there won't be enough around. Humm, does that sound like I'm a bit anxious and paranoid! Oh - that's a symptom of hypothyroidism. I'm still at the 'terrible two's' stage and want to jump up and down and scream "I DON'T WANT THIS!' I think I might have to get used to it :'(. Thanks for your help though xxx

  • Also, I don't think my symptoms are as bad as lot of people on here who are taking Levothyroxine and have done for some to only seem to be getting worse or it doesn't work. So what's the point (ok I'm being like Kevin now). And then you sort of said that taking Levothyroxin stops your own TSH working (and I have been suspecting something like this as I think I read that when you take Levo... your thyroid stoops producing it's own - not sure if this is correct), sorry to moan

  • Soldieress, I'm very very sorry, but I'm afraid it doesn't work like that. When you have Hashi's, everything changes, your body changes, it no-longer reacts in the same way, and your thyroid is no-longer going to work for itself. Whether you take levo or not, whether you jump up and down or not, whether you fly to the moon or stay on this planet, your thyroid is going to stop making thyroid hormone. There is nothing I know of that you can do to stop that happening.

    Of course, I'm not trying to discourage you from doing your own research and coming up with a cure. If you do find one, please let us all know because we'd all like one. lol But in the meantime...

    The point is, your thyroid is already failing, you are already short of thyroid hormone. Lack of thyroid hormone can do terrible things to the body. All sorts of things can go wrong. You could end up with a hysterectomy and your gallbladder removed. You could end up with cancer! (Not that I want to frighten you, but...) So, if you want to keep the rest of your body healthy and functioning correctly, start taking the levo NOW before too much damage is done.

    Never mind about other people. You are you and they are themselves. Not all people function in exactly the same way. There are so many things that can affect the way they function. There are too many variables. You cannot, for example, base yourself of me. I have had Hashi's for most of my life. I was hypo for at least 50 years before I was diagnosed. I lost my gallbladder and had a hysterectomy. A lot of permenant damage has been done. And because I've been hypo for so long with no treatment, all my hormones are upset, causing all sorts of other problems. I do not react well to levo.

    You, on the other hand, are younger (I think!). At the moment you are only slightly hypo, judging by your bloods. There's a sporting chance that you can nip all those problems such as I had in the bud. The fact that other people have trouble with levo does not mean that you will. And the fact that your symptoms are only slight at the moment does not mean that they will not get worse. They will. You can't live without thyroid hormone.

    And I repeat, it is NOT a drug! It is hormone. Like DHEA, melatonin, progesterone, and other things that people take without a second thought. And your body is going to have to get dependant on it or your body is going to die. It's as simple as that. However, if you don't like the idea of taking a synthetic hormone, you could always try for NDT. There is a choice. But you do need something.

    OK, so now I have had my temper tantrum. lol We can all be two years old when we want to. But I want you to know what has happened to you - through no fault of your own - but it is your responsibility to do something about it for your own good.

    Hugs, Grey

  • Hi Everyone,

    Grey is right! I've made friends with a lady on Thyca and she has had Hashimoto's for many years, which was not treated at first, she now has cancer.

    I was diagnosed with follicular variant papillary cancer nearly 3 months ago and had the right lobe of my Thyroid removed 2 months ago. I am now hypothyroid and getting treatment but 17 years ago I was told that I had a hormone imbalance that was not bad enough to treat with hormones. Instead, I had an endometrial resection to correct my heavy periods 4 years after the birth of my daughter. This did not work and they offered a hysterectory as a solution, I refused as I didn't think this was appropriate. I was also diagnosed with a large gall stone and I refused the removal of this and controlled it with a low fat diet. My research since being diagnosed with cancer is pointing at me possibly having Hashimoto's or a related thyroid problem even since my daughter was born 21 years ago. Don't put your health at risk, I was never told the full facts about my hormone imbalance. If I had known I would have insisted on further tests but at the time I was ignored by the medical profession.

    Also, I was diagnosed with type 2 Diabetes (5 years ago this coming August) which I think is now linked to the hormone imbalance. An underactive thyroid causes moderate weight gain, insulin resistance and hence t2 diabetes.

    I can understand why someone wants to control their condition without pills and use natural methods, I prefer this too, but if you need synthetic hormones do so and then supplement with your diet. I have started on 75mcg of Levothyroxine one week ago, It's not really having any effect (early days though!) but I'm going to see a nutritionist for help with my diet.

    Try not to worry and good luck x.

  • Be careful with the nutritionist. Not all of them know about thyroid. Resist low fat and low salt diets, and be aware of goitrogens. Also low calorie diets are a bad idea for hypos. You need 'enough' calories (what is enough varies from person to person) to support conversion or you will become more hypo. When you're hypo, you can diet yourself fat!

  • Hi Greygoose,

    The nutritionist I am going to see is a retired GP that specialised in Thyroid disorders, so hopefully he will be okay.

    Thanks for the diet advise, though. It's much appreciated.

  • Hi Grey, thanks for your long and thoughtful reply. I like your sense of humour :) I'm 46 and did have a partial (vertical) abdominal hysterectomy 3 months ago due to a huge fibroid. Unfortunately I didn't get my sex hormones checked. I've had hypo...symptoms for at least 16 years. But the symptoms got worse at the same time my abdomen was getting bigger - looking as if I was 4 months pregnant. I've heard that high estrogen levels can cause fibroids and that high estrogen is not good for hypo... for some reason. I've tried asking both the endo and gyna but they're not interested in testing. My symptoms have improved a little since taking levo...having a hysterectomy, taking supplements such as vit(hormone)D3 (I was insufficient), iron (very low ferritin) and few other supplements. But I think giving up full time teaching (I taught 5-6 year olds at an international school in Abu Dhabi for 4 years) has particularly improved my health. I think I have adrenal insufficiency too.

    Why is that "once you are on thyroid hormone replacement, the link with the pituitary is broken and the TSH becomes useless?" Surely it's more healthy for your body to work for itself, therefore leaving a window of hope that your body might recover from the thyroid attack, the thyroid gland recovers/heals and everything does back to normal. From Soldieress looking for her cloud in Cuckoo Land ;)

  • But who says it's just an attack? It does happen that people have an attack of thyroiditis - after a birth, for example - and that afterwards things go back to normal. But that's the exception.

    Hashimoto's is not just one attack. It is a constant bombardment. The immune system behaves as if the thyroid gland is a cold germ, or something, that it just has to get rid of no matter what the cost. And it systematically destroys the gland. And there is nothing your body can do to stop it.

    You have Hashimoto's. There's no way back. Your thyroid gland cannot recover and go back to normal because after every attack it loses a little bit of itself.Your body can no-longer work for itself. Of course it would be more healthy if it could, but it can't. It would be like chopping someone's leg off and then saying 'go on, get up and walk! You know it's healthier to walk by yourself!'.

    I don't know why the link is destroyed when you start taking thyroid hormone, it just is. I'm not a phycisist or a chemist so I can't go into details on these things. But that plus the fact that the gland is sick anyway, means that the TSH is not reliable to dose by. Unfortunately doctors, who haven't studied the thyroid as much as I have, who have only done one afternoon compared to my ten years, and who don't really give a rat's arse anyway, have failed to cotton on to that. Along with a lot of other things...

    Hugs, Grey

  • Hi Grey, I liked your analogy of thyroiditis/ gland damage to being legless (I mean losing a leg) :D I'm planning to get tested again soon and will ask for the Free T3 as they gave me a Total T3 test only the last 2 times. Will visit a different endo. and will mention that there's no point just looking at the TSH. Thanks for all your help xxx (hug)

  • You are more than welcome!

    Good luck, Grey xxx

  • Hi interesting stuff my wife has been on levothxine 14 years dose went up from 50 to now 125 she had some symptoms 8 months ago had a scan thyroid was enlarged and there was a 4 MM. Noduel there was no mention of that by the dr in July 2015 we were in turkey when my wife had started having a lot of symptoms dry mouth breathless gum pain no energy pain in joints food felt like not going down been symptoms eased a little but every day it's a new or different symptoms g p. Thinks virus we don't I took her to ent specialist to check the throat is good he said it's probably a thyroid issue so of we go again go to a leading thyroid surgeon by the end of the consultation he indicated it could be an autoamune issue it could resolve it self we had a scan yesterday and seems that nothing has changed the nodeual still 4 MM I have done some research and I have also realised that I have to personally sort my wife's problem cause the gp isn't he referred her to a rheumatology there is no app for 3 months it's doing our heads in we need your help and knowledge can pls tell me were to start Wat test Wat doctor many thanksssss

  • The first thing to do is get copies of your wifes blood tests for as far back as you possibly can. When did she last have a blood test? 125 isn't an enormous dose, perhaps she needs more, but you won't know unless you get a test.

    Here's what you need - minimum!

    TSH

    FT4

    FT3

    antibodies : TPOab and TgAB

    vit D

    vit B12

    folate

    iron

    ferritin

    That will do for starters. You doctor probably won't agree to all of them, doesn't sound like he's very knowledgeable, so getting them done privately would be a good idea. But the FT4 and the FT3 need to be done at the same time to see how well she's converting the Levo. If she's not converting very well, that would explain the symptoms.

    So, when you get the results to all that, post them here and someone will be able to help you understand them.

    Take care. :)

  • Thank u so much I'm on it 😀

  • Her last blood test was 8 months ago with the scan

  • Well, best to get another one, then, because things can change a lot in 8 months. :)

    But, do you have the results for that test? Be interesting to see what the levels were.

  • She had a scan yesterday nothing has changed she is making appointment. With Gp we will get all the info hopefully with your help I can get her health back no mentioning the anxiety she has omg 😫

  • Well, I hope I can help. But, as I said, first things first, tests and results.

    Anxiety can be a symptom of low thyroid. It's difficult to deal with, I know. But hopefull that will soon be gone. Fingers crossed! :)

  • Thanks again

  • thank you grey very interesting i was seen by dr toft and ive heard he is a bigg cheese with anything to do with thyroid problems.

  • Hi she33 I was under him too but discharged and then he retired unfortunately. I had no problems when I was managed by him

    Roslin

    Ps thank you for the information Grey

    xx

  • Thyroid Disease and Fibromyalgia, and the Treatments that Work for Both

    Interestingly, inadequate thyroid hormone regulation may be one of the primary underlying factors in many patients with fibromyalgia.

    Dr. Lowe explains:

    “I had prior training as a research psychologist and was able to pull forth that training and enlist physicians on the research team. It was a loose net research team until it eventually became a non-profit organization called the Fibromyalgia Research Foundation.

    Seven or eight years ago, I gave a presentation at the Fibromyalgia Coalition International based in Kansas City… I got there late and heard none of the other presentations.

    When I gave my presentation, people began saying, “Dr. Lowe, you’ve used the word “integrative metabolic therapies” for getting patients free from chronic fatigue and fibromyalgia. It just so happens, every single one of the -- at that point, considered alternative doctors -- have said exactly the same things.”

    Through their personal, clinical experiences they had come to the same conclusions we had. If they used metabolic integrative therapies, nutritional deficiencies, anti-inflammatory diet, exercise, getting off medications that impede metabolism, and possibly treating cortisol deficiency, possibly balancing sex hormones, and treating the patients with effective thyroid hormone therapy... They got the patients well.

    I said the same thing they had said, but my experience was based on rigorous scientific testing. Their experience was based on intuition and the wisdom that comes from listening to patients and working with them.”

    This is yet another potent testimony to the truthfulness of the theory that health is based on a few fundamental principles, and although you will typically address specific aspects of a disease, the bulk of the therapy is the same for ALL diseases:

    Eating a nutritious diet (a low-sugar, low-grain, mainly raw organic diet is optimally nutritious and anti-inflammatory)

    Exercising

    Normalizing hormones

    Avoiding medications (virtually all medications create further imbalances, hence the side effects and deterioration of health)

    Creating health really isn’t rocket science. It’s just “returning to basics,” and although it may not be easy, it’s rather simple.

    Logic and Deductive Reasoning in Medicine—A Novel Idea

    Dr. Lowe’s research team came to the conclusion that the thyroid was involved with fibromyalgia through the use of a method called “deductively formulated theory,” which he calls the “ultimate logic of problem solving.” Unfortunately, this method is virtually never used in medicine, and it’s a rare scientist who truly understands it.

    Dr. Lowe explains it as follows:

    “[Y]ou take competitive theories or hypotheses about what causes something, then use the methods of mathematical physicists to show which hypothesis tops them all out.

    Well, there simply is no competitor to inadequate thyroid hormone regulation that accounts for about 43 of the 46 subjectively verified findings in fibromyalgia -- reduced brain blood flow, inhibitory alpha-2 adrenergic receptors, platelets that cause constriction of arterials and cold fingers... The list goes on.

    If anybody looks at the method of deductively formulated theory and compare the inane serotonin deficiency hypothesis, which has been thoroughly refuted, there are no competitive theories.

    … Hippocrates wrote about people with these symptoms and said, if these people will get a reasonable amount of physical activity, stop eating the trash the aristocrats eat and start eating vegetables and fruits, they’ll recover. Nothing has really changed there.

    What we learned about fibromyalgia patients is that one set of symptoms: chronic aching and pain that lasts for three months or longer, and abnormal tenderness with associated symptoms (there are 12 of them), are all classic hypothyroid symptoms. It’s just another of what we call a clinical phenotype…

    [M]ost [fibromyalgia] patients are either hypothyroid or thyroid hormone resistant.”

    Thyroid Hormone—The Missing Ingredient in Fibromyalgia Treatment

    Dr. Lowe’s extensive experience with treating patients with both thyroid disease and fibromyalgia has led him to come to some startling conclusions. One, that thyroid dysfunction is a component of fibromyalgia, and second, that the conventional thyroid test is typically useless in making a diagnosis.

    Instead, he recommends simply treating fibromyalgia with thyroid hormone until the symptoms improve.

    “We give patients monitoring forms. One of those forms is the 20 most common symptoms of thyroid hormone over-stimulation,” he explains.

    … [P]atients record their basal body temperature and their basal pulse rate. The pulse rate in most of these patients is too low for their levels of cardiovascular conditioning. It’s under-regulation of the thyroid. Some of them are bradycardic (less than 50-60 beats per minute).

    If weight is an issue, they measure their weight after getting out of bed before consuming any liquid or solid, along with temperature and pulse rate. We have a lot of symptom severity scales where they estimate the intensity of their symptoms. They fill out this form at least three times a week.

    Then, it’s easy for us to chart the data on line graphs. We can see, as the dosage increases, are the data points moving in the right direction? Is the temperature rising properly? Is the pulse rate coming up so that it’s more appropriate to that person’s level of cardiovascular conditioning?”

    A one-line summary of Dr. Lowe’s research would be that thyroid hormone is the missing ingredient in the treatment of fibromyalgia that is nearly universally overlooked.

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