Think I have Hashimoto's - does it sound like it to you?

Hi everyone! I haven't been diagnosed with thyroid disease, but I've been thinking recently that I may have it. All my symptoms seem to "fit" Hashimoto's disease. I know you guys can't diagnose me - but I was just wondering if this sounds familiar to any of you ..

I've been diagnosed for many years with ME/chronic fatigue - but my fatigue has certainly worsened considerably in recent years. For the last 7 years or so I've been suffering lots of joint pain. I was initially diagnosed with fibromyalgia, then polymyalgia rheumatica. In the last couple of years, I started getting problems with chronic constipation along with dry skin and dry gritty eyes. I was tested for Sjogren's syndrome, but since I appeared to be producing plenty of saliva they said "no" to that.

By accident recently (when the GP had ordered a ultrasound scan for something else), they found thyroid nodules - which got me thinking about the possible link with thyroid problems. In the last couple of months I've felt like I've got a lump in my throat all the time - though they tell me the nodules are really small and couldn't be causing this. It's particularly problematic when I'm in bed at night - it can constrict my windpipe and make it difficult to breathe. I also have difficulty swallowing sometimes, and my voice can go croaky.

Other "unexplained" symptoms I've had recently have been swollen feet/ankles and now swollen hands. Oh, and my feet and hands are constantly cold - in fact, I feel cold most of the time now. And I have insomnia - I've had that for a long time, but it seems to be getting worse now.

I've had the TSH test many times at my GPs and it always comes back "normal". The GP hasn't done any other tests. However, since this problem with the feeling of a lump in my throat, the GP has now referred me to a specialist in general surgery (not an endo) and I've had some more tests done - one of which I think is the antibodies one. I'm still awaiting an appointment for the results.

What does this sound like to you guys? To be honest, I hope they do finally find that this is the correct diagnosis for me as at least I can start some treatment then which may help. I feel so ill, and it's just getting worse and worse, and I'm really struggling to cope. Anyway, thanks for reading - I'm sorry it's so long!

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  • Hi,

    Your symptoms sound very much like the ones i had before i was diagnosed. Ihave Hashimotos andan underactive thyroid. I was first diagnosedwith cfs and had problems swalllowing and found it almost impossible to swallow anything. I was then diagnosed with thyroiyd probs and started to medication...the swallowing got better after a while on meds although many ofmy other problems such as fatigue,pain and wekness have not gone.

    Do you have the ranges of your thyroid tests, it may be a good idea to put them on here.

  • Hi Yorkshiregirl! No, I don't have the ranges for the TSH test. I did ask my GP once, and she said they were right in the middle of the "normal" range - not borderline at all. But, reading up about this, I've found that this doesn't necessarily mean there isn't a problem.

    I have now had some other tests done by this doc in general surgery - but that was back in October and I'm still waiting for an appointment. Apparently, the doc I saw retired at the end of Oct - and my notes got "lost" being transferred to another doc! I've chased them, and now my GP has chased them (they haven't sent the results through to the GP) - so I'm really hoping I'll get an appointment soon in the New Year.

  • Hi. Hopefully when you get your antibody test results and they are positive, the medical fraternity will start to think 'thyroid' and begin to treat the cause of your symptoms. Positive antibody tests are sometimes the last line of diagnosis for hypothyroidism when all other clinical signs are being ignored. As indeed it was in my case - hashimotos .

    In any event, You will need a good endocrinologist.

    Ask for a list of good docs from the administrators on this forum.

    All your symptoms can be attributed to hypothyroidism despite your so called 'normal test results'.

    It's a pity drs rely on test results rather than good, now seemingly old fashioned, clinical diagnosis.

    Best wishes

  • Well said, banjogirl - that's just what I've been thinking the more I've read up and found out about this. It's truly awful that so many of us are just left to suffer without treatment.

  • ask your doctor to humour you and do a T3 and T4 test. that way you will know

  • Thanks ShakirasMum. I *think* T3 is the one the specialist has just done as well as the antibodies test - but, as mentioned to Yorkshiregirl above, my notes got "lost" when the doc retired (!) so I'm still waiting for the results. At least now I've found the ThyroidUK site I've been able to find out more about this. The next time I go to see anyone about it, I'll be armed with all the info and not willing to be fobbed off any more. :-)

  • Tell 'em to stop faffing around and get copies from the lab/s if they cant find the originals. Its your health theyre missing with!

  • Oh spare me these GPs who declare tests as "normal" and the stupid ME/CFS /fibromyalgia diagnosis when its far more likely thyroid ..............been through all of this with my husband , daughter and grandaughter

    It is absolutely vital that you establish exactly what tests were done over all the years and what the actual results plus reference ranges were

    I will seriously bet that your TSH is high ( unless you have central hypothyroid in which case its low )

    your free t4 is way down bottom of the range

    Your ferritin is very low.................should be over 70

    folate is low

    Cholesterol is high

    calcium is low

    Zinc

    Magnesium

    Vit B12

    Vit C

    Vit D3

    are all incredibly low or well into major deficiency

    Plus you have Thyroid Antibodies

    and your basal temperature is below 36 degrees

    Request urgently tests for all of the above

    Then start taking iron plus 500mg vit c plus a very good multivitamin and at least 4 compound vitamin B tablets a day or B12 ..................If I am right .........theres no point even if your diagnosed taking thyroid meds until your ferritin level is 70 because your body cannot utilise the thyroxine and likely you will feel worse

    Really you need to be prescribed T3 in order to flood the thyroid receptor cells and wake them up but thats likely to be an uphill battle unless your referred to a Phychiatrist for depression

  • Thanks reallyfedup (love the screen name, by the way!). By ferritin do you mean iron levels? Every time they check my iron levels they say I'm mildly anaemic - been that way for years. Always get told to take some iron tablets - but the tablets don't make a bit of difference to my iron levels. I'm mildly anaemic again the next time they test me. :-(

  • Caroline

    ferritin and folate are part of iron levels and absolutely vital in the battle to get well

    you need to take iron twice a day along with a 500mg vit c tsblet or you cant absorb it

    they had no right to ignore your aneamia you should have seen a haematologist long ago

    your ferritin must be a miniumum of 70 orvits a waste of time taking levothyroxine because your body cant utilise it

  • Thanks! That may explain something else which has happened then. About 18 months ago, I did manage to persuade one GP at our practice to try me on levothyroxine. I was on it for just 2 months. But the doc said I'd notice an immediate improvement if it was working (which I now know to be untrue as it can take many months if you've been ill for several years like I have). So, as I felt no different, she took me off it. Of course, it may well be that the permanent anaemia I have was preventing it from working anyway. :-(

  • Hi. Whilst it is of great importance to address your ferritin/folate levels by taking iron supplements etc, it is also important to remember to take iron at opposite end of day to any thyroid meds (fingers x you get diagnosed!). Iron interferes with absorption of thyroid hormones.

    This wld really apply to any vits/mins you need to take. Best wishes.

  • My problems have been a lot less severe than yours but I'm fairly young at 23 and I had been suffering for some time, probably nearly 2 years particularly with brain fog, cold extremities, feeling shattered especially on exertion, constipation, dry hair and an inability to lose weight.

    I was told to look in to fibromyalgia to see if my symptoms correlated with that and during my research I found out how staggering it was that my symptoms aligned with hypothyroidism, and I also found out how the TSH test does not tell the full picture, and you should find out everything (total t3 and t4, free t3 and t4, thyroid antibodies).

    The next time I went back my dr had decided it was a chronic fatigue referral, which although my tiredness could be quite debilitating, I knew I wasn't quite in that category, and I had really started to believe in the thyroid thing being the cause of my troubles. I asked if I could have my free t3 and t4 checked and she said 'if your tsh is normal, there is no chance your t3 and t4 will be abnormal'. So I left feeling deflated. I was getting blood drawn Anyway for other investigation so I wrote a letter to her and dropped it in asking if she could check for my peace of mind.

    I didn't think she had, so I went to another GP who said the same thing but said I could get the private BMI to do it at a cost so after a bit of chasing around I went and had a blood test with the BMI - a full thyroid check and thyroid antibodies.

    A week later it turned out my first GP did request it with the lab and my results were as follows:

    Free t4 10.7 (12-22)

    Free t3 2.7 (3.9-7)

    My free thyroid hormones, particularly free t3 were absolute minimal and I have now been on levothyroxine for a week. My antibodies were normal.

    To get this it took a lot of appointments, a few letters, several phone calls and a £110 private blood test- I'm a student as well so this whole situation has been a lot but now I finally have the answer. I imagine a lot of people my age would have just taken their GP opinion for what it was but I just KNEW I had something thyroid going on and I fought for every bit of my results confirming it. In this time I have had about 3 TSH checks and all have between 1 Nd 2 which isn't even borderline high. It's very normal! So in my case you can swe having a normal tsh has no correlation with adequate free thyroid hormone levels which are what is important to make us feel well.

    If you believe you have an issue strongly and have done your research, you need now for your own sake to know what is going on with free hormones and antibodies. You have to ask your GP and explain you want to do it for your peace of mins, write a letter if it's easier- sometimes 10 minute appointments are not enough and it's easy to feel shot down. My experience proves that labs will check free t3 and free t4 despite normal tsh- I've been told by GP that they won't but they do- if the GP specifies- you've already had blood drawn what should be te problem here? But if you get nowhere, even though £100 is a lot it's priceless for you to know.

    Hope that helps

  • Hi mk! That's really helpful - thanks. Yes, I forgot to say, I'm an "oldie" .. well, middle-aged fifty-something (feel like ninety-something).

    That's a great idea about writing a letter - I hadn't thought of that. I do lots of research and think I know what I want to ask, but when I get in the surgery the words won't come out right and, as you say, 10 minutes just isn't enough.

    I have also been thinking about either private blood tests or even seeing an endocrinologist privately (we'd have to eat into our retirement savings to do that though :-( ). I'll have to wait and see what these extra blood tests they've now done (finally!) show, and how the doc decides to proceed from there, and then decide what to do next.

  • Mk366. You likely have Central Hypothyroid whichbis pituarity failure that doctors and path labs overlook in their tsh nonsense

    you do though need to get ferritin checked ....your gp should do it along with

    folate

    calcium

    vit d3

    b12

    magnesium

    zinc

    all need to be in upper levels of their ranges for you to recover plus most importantly ferritin must be at least 70 before you can utilise thyroxine ....meanwhile you need just t3 in order to flood the cells and get them going again while you take iron plus a 500mg vit c tablet twice a day

  • I do need to get these checked but doctor told me to wait until the new year now ... It's only 10 days I think I can wait. Regarding pituatary failure what other sumptoms might I have/ what else might that have an effect on? I had my adrenals tested before the summer and was producing high amounts of cortisol and DHEA. According to blood tests my sex hormones are also in normal ranges- though I haven't had a period for 3 months now.....

  • Reading over your response your doctor was incorrect in telling you that if the TSH is normal no need to check Free T-3 or Free T-4. Wow, so wrong. I just got my tests results back but I am so fed up I don't even care to deal with it. I am now converting my T-4 with the small addition of T-3. Latest testing had normal TSH, normal T-3, with an elevated T-4??? It does not make any sense to me at all. If my TSH is normal even though it is low normal you would think the Free's would be in line too. So, yes, we do know when our body is out of whack and we usually have an idea where the problem lies. At least we get 15 minute appointment is the states. Maybe we need to pick up speed talking.

    Your Free's are abnormal. I wish doctors would stop looking at the TSH as the Gold Standard. Years ago they never checked the TSH. My T's were normal years ago but my TSH was "off the wall." Their (docs) term not mine. My primary doctor said and I agree that medicine has not come all that far from 100 years ago when his father was a doctor and they were taught that women were "hysterical" hence, hysterectomy. Since you are a student you need to be at peak performance every day and I hope the addition of the levo helps. Thank goodness you are persuasive enough to get to the bottom of your health issues even if it takes using your own hard earned money. It was money well spent. Good luck at university.

  • This sounds like me! I have been ill for 2 years and have been diagnosed with cfs / me even though I don't fit the criteria. Blood tests are all normal! I am exhausted , have terrible muscle pain, scalloped tongue, low temperature, heavy periods ,.....but my doc says it's not thyroid related! She says it's menopause or depression! I am now considering a private blood test in the hope that it shows something up. Am fed up of feeling like this.....

  • I can relate, Mini1 - I know just how you feel! :-(

  • Being fed up is a very frustrating feeling and when doctor's add the tag that you could be depressed as that is their standard line for women everywhere. I think we just need to ignore that statement as I find we women to be highly intuitive to our bodies. I don't know how non psychiatric doctors are allowed to throw this term around without getting into trouble unless they are hooked up with psych doctors to take on their difficult cases. I hope you can get a decent Endo to assist in your care. I literally had to scream at my doctor in 1988 to do another thyroid profile. He did it and was he shocked. When you are falling asleep at the wheel of your car and cannot hold your head up there is something wrong! The old menopause/depression thing. So boring. They really need to come up with other lines other than depression, menopause and fibromyalgia. I wish you the best. Time to get your tests done privately.

  • Hi yes I think the private test is what I need to do. I need to know if it is my thyroid. Thanks...

  • Hi I would go back to your GP and insist on seeing a thyroid specialist. my thyroid tests always came back normal and quite by accident my nuro specialist saw on my MRI that i had noduls I then saw a thyroid specialist who didn't think there was anything to worry about untill I said that the sound of voice always changed throughout the day. that it was croaky.so ordered a biopsy. so please get it checked out.

  • Thanks. Yes, I'm definitely going to pursue this further - either with the NHS or even privately if I have to. I've come this far and feel like I'm finally getting close to an answer as to what's been wrong with me all this time, so I won't give up now.

  • WHAT'S your temperature? that would be pretty conclusive..

  • That's a good question. I'll go and check ...

  • 36.1 - which is lower than the normal temp of 36.5 - 37.2. However, I see from the main website that this is meant to be the *basal* temperature, that is, taken at rest first thing on waking. I'll put the thermometer by the bed and try it again tomorrow morning. Thanks for giving me this idea!

  • "Since I am producing plenty of saliva they said no to Sjogrens." Oh yes, the now you see it, now you don't disease. Was your diagnosis or lack thereof based on a positive SSA Ro or SSB La, ANA, lip biopsy, Schirmers eye test for tear production. If you think getting a diagnosis for Hashi's is tough Sjogrens will drive you bats. I got the diagnosis for Sjogrens, Positive ANA, Positive SSB/LA Positive Schirmer's. I was given Plaquenil and was on low dose prednisone for over a year. Then, out of the blue they decide I may not have it after all. I have all of the symptoms - for years. After being on a DMARD and Pred for over a year the tests are now negative. Great, because that is what the medicine will do. Sjogrens and Hashi's go hand in hand. But which comes first? Sjogren's can make you feel lousy on a good day. Hashi's/hypothyroidism can make you feel like you need to stay in bed - forever. From my experience getting a diagnosis is near impossible. The hoops you must jump through are exhausting at best. I have been trying to get to the bottom of my health issues since I was 30 and I am now 55. A ruined career, financial loss. I have a host of positive medical tests but I still get the blank stare and I am tired of hearing I am complicated. No, physicians are just difficult. I recommend gently demanding Free T3; Free T4, TSH, Thyroid Antibody test and if you think you have Sjogrens have a full workup. Funny thing is I am now producing saliva again. I talk with a group of women here in the states that have Sjogrens and it is not pretty. It is truly a disease that changes minute by minute. If you call for an appointment where your eyes are in pain and feel like they are full of grit by the time you get to the eye doctor it is now your mouth or your joints or extreme fatigue, brain fog or possibly something more complicated. Start with the thyroid and GENTLY insist on the tests. At least fully rule that out. If they have not fully ruled out Sjog work on that next. Daunting isn't it? See a Rheum specializing in Sjogrens or you are out of luck. We have a Sjog Clinic in the states and I will be there in a few weeks. It really is a strange disease. I will wish you good luck. Hang in there as it is a long process.

  • Hy vinylrecords - I know just what you mean! It was following a lip biopsy that they said I produce enough saliva. I do agree with them on that. What I put down as difficulty swallowing due to a dry throat I now believe to be due to this "lump" I seem to have in my throat area which I'm trying to get them to investigate.

    My ANA was negative (although, many years ago before I knew the significance of this, a rheumy found it was positive - but then discharged me saying they didn't know why!). Oh, and I've had the dry eye test and they are *very* dry. I just have Celuvisc drops for those.

    I was seeing a rheumy until recently for Sjogren's - he's the one who did the tests - but he's now discharged me as he's confident (!) it isn't Sjogren's.

    To me, now, it does look like he might be right and that autoimmune thyroid problems might be causing all my symptoms, so that's what I'm going to pursue now.

    Thanks for your comments. Glad you've got a referral to a Sjogren's Clinic (I don't think they have those here in the UK?) and I hope it goes well. Prednisilone is horrible stuff - they had me on that for a year too when they thought I had polymyalgia rheumatica!

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