Does anyone relate to my situation?

Hi, I was diagnosed with underactive thyroid last year. I am 44 and have suffered with my health for around 20 years now, which all started with depression. I was diagnosed with fibromyalgia about 6 years ago, then chronic fatigue syndrome July 2015. The symptoms of both conditions are very similar and I suffer most of them. Now I have underactive thyroid. I have been reading a lot about it on here and other sites, and have noticed a lot of people mentioning they also suffer with depression... which isn't surprising with how we feel every day. What I was wondering is... have I had this underactive thyroid for a lot longer, but because the symptoms are very similar to fibromyalgia and chronic fatigue syndrome, the doctors have misdiagnosed. does anyone relate? I am on 25mgs of levothyroxine, but I feel as ill as I did before starting them, so am going to my doctors next week. I am also taking duloxetine and nortriplyline for my depression. Also I am constantly warm, and sweat if I do anything.. I have not felt cold all winter. last summer I sweated constantly even when doing nothing. is anyone the same? my doctor said I have started the peri menopause, but I don't think its that as I know with that is more hot flushes rather than constant sweating.

23 Replies

oldestnewest
  • firstly the 2 antidepressants are making the situation far worse because they affect the thyroid

    25mch of levothyroxine is a miniscule dose which is useless in the situation you face

    its vital that you get test results for

    thyroid antibodies

    tsh

    free t4

    free t3

    ferritin

    folate

    b12

    vit d3

    all are interelated and have to be optimum

    insist the tests are done and get the results plus ref ranges

    arrange for the test to be done early morning and fasting and on no account take the 25mcg levothyroxine in the previous 24hours

    post the results and we can help you furthur

    meanwhile you need to very slowly wean yourself off the antidepressants

    your 100% correct that the diagnosis of fibro and cfs was a nonsense its

    all of it hypothyroid and most likely auto immune hashimotos

    usually theres a family history of diabetes or thyroid or lupus or RA or endometriosis

  • Thanks reallyfedup123. I will ask my doctor to test me for all the above, though im not looking forward to it, we all know doctors don't like being told.

    I'm not sure about the family history illnesses, will look into it.

  • I have CFS, too.

    You need to keep your free T3 and free T4 in the high normal range - your metabolism is slow and you likely don't convert from T4 to T3 well, so maybe half T3 and half T4 in your dosing.

    In addition to the tests mentioned by reallyfedup123, have a 24 hour adrenal cortisol panel done. You may need to take hydrocortisone if you're low - up to 25mg a day.

    You may have problems methylating, and may need large amounts of B12, B2, B6, magnesium and folate.

    Check into your gut microbiota, too. Do a stool test and attack any problems found. Take probiotics. CFS patients have gut problems according to recent research in Australia. A lot of your neurotransmitter production happens in your gut.

    A low carb or ketogenic diet may help, too. Lots of non starchy vegetables, high quality protein, and lots of healthy fats.

    Fixing your gut, getting more Bs, along with lipids (fish oil, NT Factor) and mitochondrial support nutrients like carnitine, CoQ10, B3, d-ribose, etc. should help your brain feel better. A ketogenic diet will, and possibly pregnenolone.

    Get off the psych meds as you feel better, most will damage mitochondria, impairing energy production, and they'll sap you of folate, making you depressed and anxious.

    You might also look into chronic infections and immune system function. Oxygen therapies can help these.

    Good luck!

  • Thanks learner1. I do have gut problems. I suffer with IBS, and I suffer bad breath which I am convinced is coming from my gut. im going to mention this to the doctor this week. Im also going to talk to him about coming off one of my anti depressants which I was put on to help with my pain, but it hasn't helped at all.

  • I think you are right. Get your gut fixed, and a lot will improve.

    You might find the Food Intolerance Bible by Anthony Hayne to be very useful - chapter by chapter, it tackles various aspects of gut health with little quizzes, etc and the Appendices are loaded with info on solutions.

    I found it quite helpful to understand what our excellent doctor was doing. And if you don't have a good doctor, it will help you nudge the one you have in the right direction.

  • The advice you have had is good.

    Re the sweating, you could get your adrenals checked.

  • Hi I would just like to say my situation was similar to yours but other way round. For years I was going to the doctors with feeling tired all the time and blood tests showed nothing, this must of been going on for over ten years. Then around 3 years ago I didn't feel right and went back and all my symptoms pointed to depression the doctor was reluctant to do any blood tests as I had them do 15 months earlier and even the questionnaire she had given me to tick pointed to me I had depression,I then went back a few days later as I just couldn't cope with the way I was feeling I was crying and just couldn't cope. She ran blood tests and it showed my thyroid levels were high 21.6 I was relieved as I knew I wasn't going mad, I was then put on levo and slow increased my dose to 150mg, in between this I was also diagnosed with folate and b12 defienticy. I thought great I will start feeling better but I didn't still had over whelming tiredness my body aching and just felt drained all the time she then referred me to a endo and the consultant kept telling me I was depressed he really upset me. More test were ran and the only thing that came out of that was I was positive for antibodies. Dr then referred to rhymatolagist and all tests pointed to fibro with chronic fatigue. I'm also the same when I do something I sweat and I can't stand the summer as I feel like I'm over heating and they sweat drips off me, I'm also 44, try and get a copy of your blood tests result and ask the doctor has your antibodies have ever been tested treatment is no different but at least you will know as ask for blood test for b12, folate Also vitamin d, others on this site with more knowledge will tell you. This site has been so supportive and made me understand things more. Has the doctor giving you blood tests every 6 weeks as you are on a low dose of 25mg.

  • Hi jayuk. Your situation is very similar to mine. Are you feeling any better on the 150 dose of levo. The chronic fatigue and pain is awful isn't it? Wouldn't be to bad if it was one or the other, but together its so debilitating. I hate summer also.. its a time when everyone seems to be happy, but it makes me feel so miserable. The sweat drips off me and I feel dirty all the time, even 5 minuets after showering. I am at the doctors this week, and am going to ask to be tested for all the things others have suggested. Hopefully will get a higher dose of levo when I get the results.

  • Hi lilkitty...To be honest I don't feel any better but if you take all my medication away then I could be worse than what I am, my memory really bad and I can't tell you if I was worse last week than this week lol. Most days I could cry that I don't have any energy and find the more tired I am the more pain I'm in and then I moan at everyone at home because they don't understand and I don't say how I feel everyday as I would be like a stuck record. I struggle holding down a job and doing day to day things, my life is work and save energy for work. Have you been to pain clinic and what medication are you on for your fibro and chronic fatigue? Do ask for tests and also ask at reception for a copy of your blood test results as I always do and don't have any problem getting a print out.

  • I am guessing you have had an under active thyroid for years. The decline is slow and invisible. When Docs diagnosed your Fibro and CFS - what did they test ? Do you have your thyroid blood test results from that time ? It is quite possible they tested just the TSH - saw it was in range and diagnosed something other than thyroid. It happens so often - then they can prescribe lots of horrid pain pills that make you toxic and give you more pain.

    When you have the Thyroid CORRECTLY tested it will include the FT4 - FT3 and the Thyroid anti-bodies TPO and TG.

    It is important to know your levels of B12 - VitD - Ferritin - Folate - as others have said. They are the building blocks of our health. Would you build a house without foundations ?

    Do you have any gut issues ? Our health also begins with a healthy gut ....

    How long have you been on 25mcg of T4 - you should be tested after 6 weeks of starting and given an increase. Small doses often cause more problems ...

    I was diagnosed with Fibro in 2000 by a Consutant Rheumatologist -and moved to Crete in 2004. The Thyroid test I had in 2005 revealed Hashimotos - and once I found optimal thyroid treatment my health improved hugely.

    I am not a Medic - you can click onto my name above and have a read of my Profile :-)

    Our thyroids are our thermostats - so can cause us to feel cold and overheat too .... I experience both !

  • Hi marz. I was diagnose with fibro and CFS going off my symptoms and lots of tests which ruled things out.

    I don't have any blood results. I have never even thought about asking the doctors for results until I joined this site. I will be asking for my next ones.

    I do take strong pain killers, and sometimes I do worry about how much I have taken over the years, and what it has done to my body. but if I didn't take any I wouldn't be able to do a thing.

    I suffer from IBS which varies in what I eat I suppose. But I noticed recently that I have bad breath that im convinced is coming from my gut. I am going to mention this when I go doctors this week.

    I think its a few months I have been on 25 levo, think its a few months. yes I have read a lot about a low dose causing more problems.

    I'm glad you found the right treatment and are feeling better.

  • I doubt your GP will do the tests that have been suggested - money again. You could have a Home Testing kit sent to you from Blue Horizon. Profile 11 is the most popular one and will cover the tests mentioned. Details on the wrbsite of Thyroid UK ...

    thyroiduk.org

    Have you read any books about Thyroid ? - would you like some suggestions ? There are books available to borrow on the above website.

    Hope all goes well with the Doc ...

    thyroiduk.org.uk/tuk/testin...

    I would try and obtain copies of blood test results from the time you were diagnosed with CFS to see what actually was tested - and if the Thyroid was included.

  • It probably all started with low thyroid, which caused the depression. The depression was a symptom of your failing thyroid, which then started causing all sorts of other symptoms, like joint and muscle pain, and fatigue. Doctors like to think depression causes all these things, but then they're very fond of putting the cart before the horse, and confusing the symptoms with the disease.

  • Sounds like this could be the case greygoose. I am hoping to get to the bottom of it all soon, thanks to all the great advice on here.

  • Diagnosed fibromyalgia 2001, won't go into that. July 2015 I read an article on the treatment of fibromyalgia with thyroid meds... te article had various Doctors saying how patients improved when give T3T4 meds. Ended up at Thyroid UK website and ticked all but Two off the checklist for hypothyroidism. After just getting worse gradually over the years the thought of just shopping the decline sounded like a wonderful thing never mind slight improvements as the article had suggested so off to my GP I went. My bloods came back in range but by this time I'd been reading a lot, including the late Dr John Lowe and a book called Hypothyroidism type 2 (all the symptoms but so called normal bloods) I told my GP I was going to self medicate NDT, he said he had to advise against but totally understood why I felt I must. Gosh rambling. Long story short started NDT, thyroid s, in September 2015, at first it was amazing, felt happy, ditched the anti depressants, ails growing, eyebrows growing, skin huge improvements etc etc. I over medicated and had to reduce a lot but was going backwards, all bits and minerals optimum and. Bloods said Euythroid but I was deteriorating still. Tried 3months on T3 only but my blood pressure just kept climbing so back on NDT. When I compare how I am now to before NDT I realize how much improved I am but still very ill. Oh my 'thermostat' is pretty much okay now since going on bioidentical hormone cream. I was oestrogen dominant. No more sweats or freezing one minute and cooking the next. Best get your sex hormones checked imho. If Fibromyalgia is just untreated hypothyroidism??? Well anyway I keep fighting. I suspect peripheral tissue resistance but treatment is high t3 meds and can't take it so I keep reading and learning.

    Apologies for Twittering on, still hard to concentrate. As others have said you are on a starter dose and its shocking that you have been for over a year. Get the advised tests done and post results and start fighting back:)

    Linda x

  • Hi Linda. Thanks for your reply, what is NDT?

  • Natural Desiccated Thyroid, its what was used before synthetic meds. I take Thyroid S from Thailand but there are many different ones. :) (It's made from pig thyroid)

  • Very sadly Lilkitty, your are, like countless thousands, nay millions of us worldwide, a victim of the Great Thyroid Scandal.

    Unfortunately I will be long dead when some bright research scientist works out that what we have all experienced, is indeed, just that. Through so many years of misery, GPs and Endos have been complicit in ensuring our CFS, ME, Fibromyalgia remains undiminished, with 'NOTHING' they can do. Self preservation is a wonderful thing. The more I read this excellent website, which offers help to so many of us, my anger and cynicism increases. Coming as I do, from a long line of hypothyroid relatives in an eminent medical family, I was able to look my Endo straight in the eye when he said "You have ME. for which there is no treatment" ...... and respond ..... "I no more have ME than you do and you KNOW it!" My disdain and contempt remains undiminished to this day. To get anywhere you have to fight but sadly, the doctor who gave me back my life, is now dead and there is nobody I can confidently refer people to. RIP, brave and wonderful Dr Gordon Skinner, your legacy lives on in your fortunate patients.

    DollyCon

  • Hi Dollycon. I don't understand why people are not being tested properly for this when all the evidence is there. Do you think its all about money? I do. The medication is expensive.. so fob us of with other things like fibro ME and chronic fatigue, and there is treatment.

  • Thank you all so much for your replies and advice. its all still a bit confusing, am trying to get my head around it all. I am at the doctors Wednesday, so will ask for tests you all mentioned.

    I will eventually reply to you all individually as you all have your own stories and ask me about different things.

    I am glad I found this site, you are all so kind and helpful. Thank you!

  • Actually I can't find any studies suggesting that PPI anti-depressants affect the thyroid or thyroid medication, and at least one that shows there is no effect. And of course, PPIs have historically been used as 'uppers' because they raise seratonin, producing something of a mild high.

    You may or may not need antidepressants. When my thyroid started to give up I was diagnosed first as depressed, then with CFS where the only effective treatments, I was told were anti-depressants or CBT. But because I had been severely depressed when younger, I knew the difference and flatly refused the medications or the diagnosis.

    When I finally worked out that it was my thyroid for myself (I just never managed to google the right terminology!) my doctor admitted that it was possible, but that the local endo chieftain would lynch her if she treated me with levo if my TSH was below 10. At that point I had a TSH of 'only' 3.65 but a 10 year history showed it gradually climbing. Luckily Gordon Skinner was still alive and I went privately to him despite being broke!

    So yes, you have almost certainly been fobbed off with a host of stupid diagnoses with possible permanent damage as a result.

    Never forget that medicine is our latter day medieval church. Money and power, backed up by ideology.

  • I have just mentioned the money thing to Dollycon.

    Was you finally diagnosed with thyroid problems?

  • Yes

You may also like...