newly diagnosed.. Longstanding hashimotos

Hi everyone. I finally got a diagnosis today of hashimotos after 27 years of questing for an answer. It's a shame it took so long. My mom also has it and I found out my three maternal cousins do as well. I also have had very low vit d for at least several years (13-23). Megadoses don't hold. It just drops again.

my antibodies test was normal, but my ultrasound showed moderate inflammation and that is the way it was diagnosed. i have a lot of questions. After being treated as a hypochondriac and told I have a somatic disorder so many times, I prefer to look for answers in the community and in scholarly papers.

I started on thyroid hormone at the end of April after my thyroid stopped working. However, I still feel pretty awful. The hypersomnia is a lot better, anxiety and migraines too. But I've had swelling in my arms and hands since January (I think that's when the thyroid finally stopped working) and it's still the same. Pain has been coming and going.. Sometimes it's quite bad 7-8 of 10). I can live with that, and even the laundry list of systems across the spectrum, but I am a little concerned about some of the more recent symptoms that developed over the last 4 years.

I have problems with my muscles. they fatigue pretty readily (and then are pretty useless). And one muscle (in my thigh) sometimes stops working entirely and then works very slowly with periods of rest. If I push too hard, sometimes I get suddenly hot and have trouble breathing. A full stop and about 10 minutes of rest and I feel a lot better, but it causes persistent fatigue for a couple of days.

Sometimes I just have acute all over fatigue and at rest my muscles lose all tone. I end up just propping my legs and arms in place. And I've developed diplopia (double vision) that gets worse the more I use my eyes.

Reading about hashimotos I can see that all of this can be traced to hashimotos. But it sounds like a somewhat severe manifestation. Is it? Do you suppose eventually the thyroxine will help... But maybe it will take a few years?

Any thoughts on this are very welcome. I appreciate in advance your perspectives.


24 Replies

  • Just a few thoughts - magnesium - weak muscles, B12 other neuro symptoms (once Vit D sorted & all that calcium jazz) also B complex - nothing works alone and being Hypo (with or without Hashi) we tend to have low vital minerals/nutrients - which luckily we can sort ourselves! (usually) J :D

    e.g. Going for a walk - feel good - bit of a hill & legs like jelly, sit awhile & watch the smokers and great grannies walk by - the brow lowers - I can do this.... well sort of, eventually...grr...

    sorry I forgot to say welcome Crystalheart - are you in N America?

  • Lol. I would love to be able to go for walks again! Play soccer, do martial arts, horseback ride. I really hope I get my body back. I miss it. 😩. My b12 is normal. I have kind of hit or miss tried supplements. A lot of b vitamins make me feel sick. I also am fructose intolerant. My relationship with fruits and veggies is not so great because of that. It's amazing I'm still alive just based on my nutrition.. Grin. Yes, I am in North America. Phoenix, Arizona, USA. My calcium has been in the 8 ish range. my mental clarity has been improving. Less brain fog, better memory.

    Enjoy your walk and the grannies. Thanks for the welcome!

  • I try to walk but can't far - guess I'm just awkward by trying...

    I'm determined to 'get that body back' - and why not? this is temporary.

    I recognise 'the matter of fact' I'm in pain style from my TOS groups over the years, they emerge from pain-killer fog/depletion to realisation of basics - eliminating deficiencies and taking regular B12 shots, avoiding gluten, sugar etc. Normal means what when you don't feel normal? (even blood tests include whats circulating not being used).

    I dare say I've learnt a bit - it can make a difference when you take responsibility for your own health into your own hands and question the medics... they are less behind across the pond but still behind reality ... IMHO (except for folk like Dr Bergman of course).

    Double vision is probably low B12 - I have a friend's experience of that - had to have prisms (she had badly treated PA - 40% of thyroidies are B12 deficient) - even more with low Vit D - we use it up so keep taking it! (with regular blood tests). Nothing works on it's own. Good luck J :D

  • Jennifer, sorry to hear it has taken so long to get a diagnosis, especially when it is in the family! I also have a lot of relatives with hypo but as far as I'm aware i am the only one with TPO antibodies. With lots of help and suggestions from this site and by reading several books I decided to go gluten and then lacto free. I have almost got rid of my TPO's and feel a lot better. I also addressed vitamin and mineral levels. Have you had your Vit D, B12, ferritin, folate and iron levels checked? Might be good to get them checked out and post on here for further comment/help. There is a lot to learn about hypothyroid and Hashimoto's and I soon learnt I wasn't going to get much help from NHS! Loads of help on here, just wait for coemmnets to roll in!

  • I also have the mthfr mutation... Double mutation actually.. A1298c which interferes with bioavailability of folate. My folate looks normal, but what my body can actually convert and use is another issue. I'm on a prescribed food supplement for this.. L-methylfolate

    Vitamin d is always very low. In the 13-23 range. . Megadoses don't hold.. It just goes back down.

    last time my iron was checked it was too high. So, I've been steering away from iron rich foods for a while. I'm not sure about ferritin. I'll have to check.

  • Crystalheart, half life of vitamin D is 60 days. So, yeah, megadoses won't 'hold'. You have to keep taking this stuff. Sort of like filling the gas tank regularly. That doesn't 'hold' either unless you never drive the car. ;)

  • Welcome to the forum, Crystalheart.

    It can take decades for Hashimoto's to wreak enough damage to the thyroid to cause hypothyroidism but doctors fail to realise that symptoms can precede abnormal thyroid bloods by years too.

    Diagnosis in April means you may not yet be optimally medicated or have only recently become so. Symptoms often lag behind good biochemistry by several weeks/months. Do you have recent thyroid results you can post with the lab ref ranges? We can advise whether you appear to be optimally medicated or whether you should ask for a dose increase. Suppressed TSH dampens Hashi activity but doctors aren't keen on prescribing suppressive doses.

    Thyroid dysfunction can trash vitamins and minerals so it's worth having ferritin, B12 and folate tested. If you can't hold vitD you need to supplement continuously to maintain levels. 50ng/ml is optimal in the USA.

    Muscle weakness is a common symptom and can take a long time to resolve. Swelling is usually caused by mucin and that is very difficult to shift. Hypothyroidism can affect eyesight and although it isn't common, Hashimoto's patients can have thyroid eye disease, so you should consult an optician who will refer you to an opthalmologist if necessary.

    100% gluten-free diet can help manage Hashimoto's flares and will often reduce antibodies in those that have them. Food sensitivites and intolerances often develop in Hashi/hypo patients and eliminating gluten may help manage any digestive issues you have and non-mucin swelling.

  • Thank you for your response. I am seeing a neuro-ophthalmologist and have a follow up appt to discuss Hashis soon. The doctor said my last test results were near zero. I am wondering though, about an article I just read about rt3 and impaired transport of thyroid hormone into cells. I'm thinking about looking for an endo who is up on the latest and see if that is part of the problem.

    The one thing I haven't seen addressed is that when all of this first started almost 30 years ago my eyesight seriously tanked. I went from 20/30 to 20/200 in one eye and 20/400 in the other. I forget exactly how long it took, but maybe 2 years? Then it stabilized and has been the same ever since.

    But if it is a cellular energy/thyroid deficiency at the cellular level, maybe the beginning just caused profound damage.

  • There has been research done here in Crete about Hashimotos and VDR's - Vitamin D receptors. There can be a problem with them. The research paper is on Pub Med so maybe you can find it. I have had a quick look. It was posted by Hellvella - from this forum. It was of interest to me as I live in Crete !

    Am sorry you have struggled for so long and I do hope you will soon feel better. I too have Hashimotos - also LOW B12 and VitD. I have learnt so much from this forum and hope you can too. You can click onto my name to read my edited Profile ! The things that made a difference to my health - VitD - B12 - T3 and information from this forum :-) Just make sure the T4 is converting well to relieve lots of your symptoms. Low D implicated in many eye conditions. You sound well informed - it must be difficult having to work on so many issues. So take it slowly and consider that an immediate return to health will prove difficult. It is usually a slow process - not being negative - just know from reading here that fast improvements rarely last. You are looking for a slow but solid progress.

    Will look out for your posts.....and wishing you well....

  • When you say your B12 is "normal" what is it? And have you had a read through on the Pernicious Anemia site?

  • Crap. I hit a button and lost my long involved post.

  • I have spent the last several days researching clinical papers and research on thyroid disease, reviewing the ATA's guidelines on treatment and why, and reading other articles also. You know, I have to say, I'm just floored.

    There is so much literature out there.. including literature from.. well I've read papers going back to the 60's, documenting impaired cell metabolism, fibromyalgia, genetic mutations and polymorphisms, etc. that all conclude that there are several ways you can be deficient in thyroid hormone, affecting different systems. And in some people t4 doesn't solve symptoms because the transport receptors or the mechanisms that convert t4 to t3 or the poor cell energy metabolism itself result in the conversion not working properly or T3 not passing into the cell properly. And yet, does anyone know this?

    I saw an endocrinologist when I was in my 30's ... approximately 12 years after symptoms started. She told me I had to accept that I was getting older and wouldn't feel as great as I did when I was younger. Really. She said that.

    I recently saw a muscle disorder specialist at Barrows *BARROWS* who said that I had a somatic disorder because too many systems were affected. I was diagnosed with Hashimotos a week later.

    I have also been seen by a neuro opthalomogist. My eyes hurt *so* bad. The whole right side of my face gets swollen. And my eyesight tanked when all of this first started 27 years ago.. Over two years my vision went from 20/30 and 20/40 to 20/200 and 20/400. I have had swollen arms and hands since JANUARY. In the beginning, it was my knees swelling, and my elbows. I feel so angry that this was never caught. I'm angry because the symptoms are KNOWN to be related to thyroid diseases. But it was never caught because my labs were always normal or borderline normal. No one ever looked at any of the other biochemical reasons.

    I'm sorry. I'm ranting.

    In any case, now, after so much disappointment in my medical care over the years, I am just burned out on doctors. I don't trust them. I feel like I can do better. So, I've ordered a dna test from 23andme. They post your entire raw dataset for you to access. And I'm going to do some research and see if I can map the genetic markers for known thyroid issues and once I have some clear evidence of what is wrong, then I can pursue actual helpful treatment. I'm also writing a scholarly book on somatic disorders that references the research and clinical abstracts and delves into the cost and quality impact of somatic disorder misdiagnosis.

    I had a friend who recently died from bile duct cancer. It was diagnosed only 6 weeks before he died. I wonder how many times he was told that his abdominal symptoms were due to diabetes, obesity, getting old.

    My current PCP really disappointed me too. I thought he was so great. Then I asked him about the pressure and discomfort on the front of my throat. I asked if it could be due to thyroid, because my mom has hashimotos too and my family on her side has a lot of thyroid disease. He just looked at me. I said I know I have neck fat also, but, ... and he said, yes it's just because you have too much fat on your neck. He didn't even Touch my neck.

    I had another appointment with his PA after that.. I asked him to see if my thyroid felt enlarged. He said no, but found a nodule and that is why I got the ultrasound that diagnosed hashimotos.

    It showed moderate inflammation.

    Maybe if doctors weren't so keen to label people with psychiatric problems fewer people would feel sick.

    Have you read the Colorado prevalence report? They found significant under diagnosis of thyroid disease. I can't say I'm surprised. Because the medical profession is lame.

  • I posted some resources on my profile. Unfortunately it only allows so many characters

    I put up a variety that have good bibliographies. Happy reading!

  • Wow. I'm not sure if this is the 'right' thing to say Chrystalheart, but what an interesting read your posts are. I don't mean that to sound as if you are not a real person but just a case study if you know what I mean but, reading it, it is hard to believe that someone has been through so much and still has a fighting spirit! I have not suffered anywhere near as much as you and am, in fact, at the beginning of my quest for good health, but a couple of things you said struck a chord. I have felt very unwell for about fifteen months and have in this time tried to get a doctor to take me seriously. Like your doctor telling you that you were getting older and wouldn't feel as well as when you were younger, mine told me that I was just not a 'winter person' and would probably feel better in the spring. Also, I have thought in the last couple of days, that my neck doesn't feel quite right. I can't put my finger on exactly what it is but, again, thinking about it, none of the doctors I have seen have even looked at my neck, let alone examine me. As I said, I am in nowhere near as bad a state as you and I commend your mental strength to carry on the fight and go it alone. I wish you every success and hope you find or receive the treatment you need to make your life easier and happier. Good luck xx

  • Well I have had 27 years of untreated disease. I don't wish that on anyone.

    I am optimistic after my research that I can get back to reasonably good health. But I will admit I am trying to cope with a lot of rage and frustration.

    I had to give up a lot over the years, long walks, soccer, tKd, horseback riding, constant reading, painting. It was so unnecessary.

    Common throat symptoms include sensitivity to touch in the front of the throat, hoarse voice, feeling like you have something stuck in the back of your throat, and visible swelling of the thyroid and/or tissuesin the front of the neck.

    I hope you find your answer soon. Have they done all of the blood serum tests? Tsh, t3, ft3, ft4....

  • It sounds like you have had a bad 27 years! I had a nine year battle to be diagnosed with Coeliac Disease - along the way I was told everything from that I was just fat (my stomach bloated as a reaction to gluten) to being told I had ovarian cancer. Just after I finally got a diagnosis for that, I started to feel generally tired, lethargic, muscle aches and pains, my hair started to fall out, I have dry itchy skin across my chest and neck etc etc. My throat is just mildly uncomfortable in certain positions but I can't see anything visibly wrong. I have had thyroid function test but they were all in range. I pressed for an antibody test but my doctor refused. I have just paid for a private test and I have a positive result, with antibodies present. This latest test also shows mt TSH has risen to just above 6. I only got these results on Thursday so I am currently trying to decide my next step. All I know is that I can not go through another 9 years waiting to be diagnosed like I did with CD.

  • I'm so glad you pursued testing on your own. I used to think medicine and diagnostics and doctors were so advanced. I now laugh at my naïveté. Lol. Can you just go to an endocrinologist? Or do you need a referral?

  • I would definitely need a referral to see one on the National Health but not sure about privately. The

    laughable thing is that when the doctor refused to test me for antibodies and I said I would go private, he offered to write me a referral letter!!

  • Isn't that ridiculous?

  • I just met my new endocrinologist. It was a mixed bag. Because of my long history I took photos of my swelling, compiled lab results so she could see the fluxuating values over time and a brief history n chart of family illnesses. Her p.a. was so earnest, so sticking to the script she knew. She was encouraging because she brought up that if I'm unwell on t4 they can add cytomel or switch to armor or other alternatives. But either she doesn't know about the genetic research or she isn't allowed to address it. The doctor seemed more knowledgeable and was very thorough. I'm now low carb, high protein, low fat for life. 800-1200 cals per day. Eat every two hours. My chol had risen to 275 since January. It was 227. She is repeating labs n ultrasound to look at the thyroid, which she says feels slightly enlarged, n 1 cm nodule. I am on 5000 ui d3 for life. Maybe even raising to prescription levels.

    I have been reviewing labs going back to 1990 to see if there is something telling in the fluctuating abnormal results.

    My last vit d was 13. I've never seen it over 28 and the lowest was 11. (50,000 units weekly for 8 weeks... It dropped right back down.). B12 very average. 662, 524. My iron gets high though.. its 156 last check before that 184. Both showed as high on the labs. Iron binding has gone as high as 416. Iron Sat down to 50. Calcium down to 8.2 (now) and as high as 9.3. Potassium 3.6 just over the low end of range at 3.5. Ferritin 29. Alk phos 100 high. Alb/glob 2.1. Barely high (high ends at 2). Then dropped back to normal. My creatine skins the bottom. Range is .5 to 1.4. Latest is .61. Has been as high as .9. Bun creatine ratio has been high 3x-- 27, 28.6, 30. And as low as .04. Range is .03-.12. Bilirubin jumps around too. As low as .1, as high as .7. Range is .2 to 1.3. Mostly .3, .4, .5. Abs monocytes .4 or .5 where range is .4-1.6. Immature granulocytes high at .2%. Abs immature granulocytes high at 235. Copper urine was 12-low n low copper concentration of 7. Normal copper serum. Arsenic high at 57 n 53. Eye dryness on schirmer scale was 12rt n 10 left when diagnosed. My t3 was tested twice. The ref range is 33-45. My results were 33 and 34.3. Not sure what is causing the massive swelling. Maybe water retention or fat tissue swelling. We are lowering t4 to .88 from 1 because she thinks I'm over treated. One step at a time. More meds may be coming. My swelling is so profound I'm wondering if I'm developing myxedema. No lumps yet, but my abdomen especially gets do swollen I look ready to give birth (literally, no exaggeration). But I also have a growing fibroid. 5.1x4.7 now. Hurts.

    Any observations? Theories?

    Thank u.


  • The thing that irritated me a little is that they think my hashis is recent despite all evidence to the contrary. Also that the vision problems could possibly be relatedbecause that 'is only with graves disease'. I asked if the fluctuating nature of hashis causing thyroid hormone ups n down could be enough to do it... She changed the subject. (The pa). I see the Neuro opthal soon though.

  • Jen

    We should message privately as have been through the eye, muscle and nerve issues, and am coming out the other end, after nearly 30 years


  • Let's do it!

  • So I have discovered so much more. I am so grateful for direct to consumer testing. I was iron deficient, which I'm now on high iron doses to correct. I was diagnosed with sun s tachycardia, life threatening idiopathic angioedema and idiopathic urticaria (swelling, anaphylaxis (where the swelling affects breathing and swallowing), and igg deficiency (including deficiency of 3/4 igg subclasses). Also found my b and t cells are low and occasionally c4 complement. All of that is autoimmune dysfunction. I also have oral allergy and oral latex syndromes. That means my body is treating everything? in the plant families I have allergies to as invaders. My ige .. What causes allergy symptoms.. Is elevated. So I'm on a lot of different allergy and asthma meds and eating a very narrow diet. It has helped a lot. To get me further the plan is xolair shots to suppress ige. Also allergy shots. And probably immunoglobin too. Looking for good hypoallergenic vitamins now. Was referred to the thorn pharmacy. I need to get on top of my methylayion pathways to really help my nutrition, but I think I need a little break first.

    Oh, and my last two neuropsych reports showed that my iq first dropped from146 to 108 and then rose to 120, but no one cares. The neuropsych said I should think about other things that I had great skills. He and my doctor both think ignoring my health is a great idea. Most of the medical profession truly sucks.

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