Thyroid UK
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Please read as I’m sure we can all relate in some way!

“How are you doing?” she asked one morning. “I don’t know if I can take this anymore,” I told her. “I just want to get better. I want to go for a day without thinking about my body.”

I read this article and could so relate to it that it made me feel very emotional. It’s worth a read as Meghan expresses how many of us can feel everyday battling hashimotos ♥️

Going gluten free and following the Paleo diet has had a huge impact on improving my symptoms. I’m not great but I’m glad to say “I’m ok”

newyorker.com/magazine/2013...

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I'm in the same boat, and this morning posted some results which confirms Hashimoto's too. I've just been doing some reading into the Gluten Free and Paleo diet, so its good to hear it had some positive effect for you. It seems so complex at the moment, but I guess its something that you learn as you go! Thankyou for posting this, I will give it a read!

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It’s a long journey but that’s because I didn’t go gluten free sooner. I’ve always watched my carbs but only recently have I realised gluten is what’s causing my stomach issues and severe tremors. Once you feel the benefits it helps to stick to the paleo lifestyle

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I’ve got Graves but I’m get terrible stomach pains and wind - did gluten free help you with similar symptoms

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Going gluten free has improved my health greatly. I didn’t realise how much gluten affected my body especially my stomach. By cutting it out I noticed my tremors more or less stopped and I felt I had more energy. I’ve had severe tremors for years and just didn’t see the link. Also my throat doesn’t swell up as much. I’ve also started taking a good probiotic (contains 7 live strains) to help my stomach heal. And it’s all helping!

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Thank you, what’s the name of the probiotic?

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I’ll find the details and post later just rushing out. But I researched it to find a good one!

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MicroBiotuc Plus they’re Dairy free and vegan I think made by either uni-vite or NutriShield but they’re all the names on the pack which is green and available on Amazon for about £16

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Wow have you got a second opinion? Or considered going to a private Endo who can write to your GP to prescribe thyroxine? You should be treated!

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MissFG ~ I just typed out a reply to that member, explaining and advising her course of action re having meds stopped, and she's vanished! I'm now worrying that she's going to be ill! I wish people wouldn't do that ~ it stresses me out! x

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Don’t worry I was concerned that she was on levo but then suddenly stopped by her GP it didn’t make sense?! Maybe she made a mistake until it was discussed with her and she got embarrassed. If not maybe my feedback might have helped her review her treatment with her GP. Or she’ll come back on here when she’s ready x

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You must feel shocking!!! Were you on medication to bring you TSH down from 44 to 4.67? 44 isn’t only just out. Mine was 147 when diagnosed but even if I go slightly out of range now I feel terrible.

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So they stopped your medication because your TSH lowered? That just means it was doing it job!

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Yes I relate to this so acutely. I particularly find this sentence ‘To be sick in this way is to have the unpleasant feeling that you are impersonating yourself’ very easy to relate to. The often unfulfilled yet hopeful, never ending journey to find truth, reasons, relief in the form of diet, medication and a doctor who has an idea, any idea and knowledge to make a difference to one’s life.

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I think diet meditation medication mindfulness etc gives you the feeling of taking control back so that we’re controlling the disease not the disease controlling us!

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MissFG I admire your optimism. I have never felt so out of control in all my life. I couldn’t have done more to have ownership of my predicament with this disease and nothing but nothing appears to be helping. Not diet, sleep, probiotics, medication, tweaking or change of meds. The only hope I seem to have is the future, the passage of time. I admit to being impatient but I still manage to work and I do have high standards. I do want to have a life of quality.

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Yes I’m just on probiotics now I researched and found a good one so I’m hopeful it will help. Have you tried the paleo autoimmune protocol? And are your meds correct ie FT3 top of range? And supplementing where needed? They say stick to the diet for 2 weeks and you’ll see a difference I have and even my daughter has. I’m only sick and tearful when I cheat so my own fault.2 years I’ve had no life and struggled and I’m not putting up with it anymore! Doctors don’t help just sympathise so I’m helping myself heal it is possible x

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Thanks for the support! Yes I’ve tried all for a year and on Levo my FT3, 4 and TsH were almost as they should be. Now on T3 that I’ve searched high and low for and still have severe muscle pain and stiffness.

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Are you strict gluten and grain free? Have you been tested for other autoimmune diseases?

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Yes to both questions. I have been tested for rheumatoid arthritis and had food intolerance tests sent to Germany. I had a significant intolerance to lactose so gave up dairy, gluten and soy a year ago. I believe if possible it is best to give up all grains so I have and much but not all of my diet is organic. I have more energy on T3 but the pain remains. Feel like a bus has run over me in the mornings when I wake. still have that facial, hand and ankle puffiness in the mornings also. I have only been taking T3 for 3 weeks. My doctor tested for kidney and adrenal problems but all results negative. Even my cortisol was fine.

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My symptoms improved massively on T3. I couldn’t function on levo. I have now just reintroduced 50mcg with T3 to see if that helps. I think it’s an ongoing juggle to see what works. We’re all individuals so we don’t all fit in a box. I just hope you get to the bottom of the cause. I have inflammation in my muscles but it only showed up in MRI’s so I know the cause of my muscle pain but diagnosis of myosotis is still up in the air. Have they tested you for muscle diseases? Or suggested fibromyalgia? X

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MissFG I really appreciate having this conversation with you. How long did it take for T3 to make a difference for you? I had fibromyalgia post Glandular Fever but it was more of an ache and muscle weakness. What I experience now is a burning, searing pain in arms, wrists and across shoulders back and front, like when lactic acid builds up in the muscles. I don’t know what myosotis is. I believe fibromyalgia is becoming a nebulous blanket term for enexplained muscle pain.

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Glandular fever is a cause of Hashimoto's

Presumably your have read most of these links .....but just in case

thyroidpharmacist.com/artic...

drhedberg.com/epstein-barr-...

hypothyroidmom.com/hashimot...

drchristianson.com/epstein-...

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I remember reading about this before. I had glandular fever when I was about 23 and haven’t been right since especially with fatigue. My sister also had it at the sane time and now recently got diagnosed with Hashimotos too!

Quick question is glandular fever Epstein Barr? And can probiotics help with stomach and digestive issues to resolve this and therefore help heal in conjunction with a gluten free diet etc

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Yes Glandular Fever is Epstein Barr, also called Mono in USA

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Yes thanks for this Slowdragon. I am certain this was the inspiration for my Hashi’s. My experience was severe, hospitalized with swollen liver and took 10 years for my body to make antibodies. I have recently been tested to see if I still have the virus active but I don’t. Apparently I have ‘ghost’ antibodies. I feel like a ghost most days so that would figure.

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I meant to say that my inflammatory markers, CRP and ESR are always low.

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Inflammatory markers can be within range mine always have been even EMG and nerve tests were normal however my inflammation has been in specific muscles which they probably missed in the test. My muscles burn twitch and spasm. Any kind of exercise makes them worse. I agree fibromyalgia can’t be tested and I believe is just given as a diagnosis when nothing else can be identified. However it can be treated. I’ve had inflammation years and was on propranolol which stopped working 2 years I more ago when I had my huge flare of thyroiditis.

But I went on gabapentin coming up to a year ago and it’s been a life saver. Gluten gives me tremors and my muscle weakness and fatigue means my body shakes also. I’d suggest asking to see a rheumatologist luckily my Endo ran a lot of tests and referred me but it’s a long slow process like everything else x

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Thanks so much for all this info. I have seen a rheumatologist who ran tests and said all was negative. I have private med cover in Riyadh, Saudi where I work so can have testing done at the drop of a hat. Out of interest what is Gabapentin? I have no obvious reaction to gluten and tests for Celiac and intolerance came back negative but I don’t touch it as since what I have read it is poison to the body. I feel no better or worse for eliminating it from my diet but I do as I’m told and apparently it is best for me. My bone health is ab fine. Is your muscle issue related to Hashi’s?

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Were still not sure if my muscle weakness is related to hashi or other autoimmune diseases as I’m still having ongoing tests. It takes quite a while to get a definitive diagnosis. Gabapentin is a muscle relaxant which helps with my tremors and shakes

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Thank you for posting ~ I could also relate. Very emotional and nicely written......

This forum is definitely my sanatorium!! it's good to know you're not alone in all this pain and confusion. Tragic loss of life though...... Let's hope we all find our recipes for rehabilitation soon. xx

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I felt very tearful reading this too so glad it’s been of help to you x

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‘Tragic loss of life’ is so accurate yet sensitively stated Mamapea1. I remember when I was diagnosed with ME post severe Glandular Fever and saying to my GP that I understood I wasn’t going to die with the condition but thought it a an absolute state of hell to have to live with and endure. 20 yrs on with a diagnosis of Hashi’s, uncontrolled, I am uttering the same words to my Endo. The wonderful thing about this site is that people appear eternally optimistic and are true ‘triers’ In the face of adversity. The flesh may be weak but the spirit is alive, well and truly inspirational!

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We have a couple of things in common, Baobabs ~ I was also diagnosed with ME following glandular fever, although I only became seriously ill after exposure to polio vaccine, which left me paralysed for 3 years. I was told my thyroid had no output and when thyroxine (even in doses of 300 mcg) didn't work, they said I was still 'getting over the ME', changing it later to fibromyalgia, CFS, then I acquired Raynauds and Sjogrens!

I got lost in all the labels, but when hypothyroidism wasn't too bad I was able to continue working, and I had accepted that whatever had happened, I was never going to feel completely well. I even managed to have another child ~ who is perfect, but I would probably have terminated out of fear of abnormalities had I have known what my TSH was during pregnancy ~ I only found out a few months ago when I finally got copies of my medical notes ~ she is a medical miracle! :0)

GP had written "patient unaware of results" next to crazy figures, presumably so that a different GP didn't tell me, perhaps because they kept saying I wasn't pregnant and insisting it was the menopause, and time had slipped by. I no longer have faith in any of them.

I carried on until a prolonged period of severe emotional stress followed by the menopause put me straight back to the ME/CFS state, which I am hoping T3 will help me with. For several months I have increased levels of vitamins/minerals as they were dire, so now is the time for the T3. I hope you will see some improvement yourself ~ it's such a minefield isn't it?

Good luck and warmest wishes Mamapea x

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So lovely to just chat about the plight of others! So thrilled that you have managed to produce children regardless of what appears to be less than great medical care. I am interested to hear what you say M about the polio vaccine. When I developed Glandular Fever at 40yrs old a gym friend who was an immunologist asked me at the time if I had received Hepatitis C injections within the last 6 months. I taught special needs children at the time and was often bitten so yes I think I had 4 injections altogether but still hadn’t made antibodies to the disease. She said that research was showing a link between receiving these injections and the onset of Glandular Fever. She claimed she would never have her own children vaccinated for anything such was her disbelief in vaccinations. I never received any vaccinations up to this point in my life as my mum was absolutely against it because my cousin died as a result of Smallpox vaccine. I have another vaccine story to tell regarding the MMR vaccine when I worked in special needs Ed but wouldn’t dare publically write it. I’m sure you know all about problems with T3 prescriptions and acquisition in UK? I believe there are lots of cover ups, anomalies and dark hole activities operating in our government regarding all sorts of things not least of all concerning medicines and food production.

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It is reassuring when you hear other people describing the same feelings. I can relate to her thinking she can't remember the last time she felt normal, that eyes feel like they're sitting in front of you, like glasses, and forgetting words... I'll definitely save it to share with anyone who doesn't understand the disease, although it's a really long read!

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Thank you for posting this article & thanks to those who commented. My mother had mono in college & gave birth to a sister not long afterward. I was not spaced from my sister & I understand my mother was not well following my sister's birth. She spaced her other children & they were turned out fine. I was carried while she had some sort of infection from what I could gather. I wonder if it made me more prone to develop thyroid issues.

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Thanks for the link, interesting article. I particularly enjoyed some of her description of fatigue.

Although I was getting a bit annoyed towards the end. She was trying so many dietary changes, but not using any rest or cutting down on her job. I think it's becoming a bugbear of mine, having been under 1% of well, to hear people who are at 80% complaining and describing things as if they can't do anything, when in fact they're still doing most things!

I was relieved at the end when she started discussing some of these things, and talking about acceptance, and changing your perception so that things become 'okay'.

This was my favourite bit of description:

"The worst part of my fatigue, the one I couldn’t explain to anyone—I knew I’d seem crazy—was the loss of an intact sense of self...It was that I no longer had the sense that I was a distinct person. Taking the subway to N.Y.U., where I taught, I felt like a mechanism that moved arduously through the world, simply trying to complete its tasks... Normally, absorption in a task—an immersive flow—can lead you to forget that you feel sick, but my fatigue made such a state impossible."

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Had a search, and this article has been posted many times. Greygoose seems to be the first: healthunlocked.com/thyroidu...

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