Do I have Hashimoto's or CFS?

That's the question I am pondering over at the moment. Hope that some of you may be able to offer some wisdom – to help out, this is the story so far (this is long – very sorry!):

On 19 February 2015 I started to feel like I was coming down with a viral infection. There were things going round the office so this seemed normal. I was brand new to the job, so determined not to be ill three weeks in I put my head down and worked through it. Had to give in after a couple of weeks though, was very poorly and ended up having a week and a half off work, the GP diagnosed Labyrinthitis. I struggled back to work in March and just didn't feel any better at all. In April I went back to the GP and said I was still feeling very ill, almost 3 months, and what could they do.

My symptoms at that time were:

Felt like I had the 'flu – aches and very weak.


Very cold all the time, even in a warm room.

Sore throat.

Tingly sensations in arms and pins and needles in arms and legs.

Lightheadedness / dizziness

I had gained almost a stone in weight without eating any more than usual (I was also fit and exercised regularly up until the point I became ill)

The GP, Dr J, tested TSH (among other things) and everything came back normal (B12, iron, calcium etc). I can't remember the actual TSH result but it was in normal range. Vitamin D was low, I was supposed to be taking calcium and vitamin D for osteopenia and had lapsed a little – oops. I returned to taking these properly and have done so ever since.

A friend of mine who's a qualified nurse told me to request more thyroid tests – including thyroid antibody tests. The next doctor I saw, Dr B, told me there was nothing really wrong with me, that I was depressed because I'd been ill for three months. Well... duh... of course I wasn't happy about it but I have been actually depressed previously and I know what it feels like, and even now (almost 9 months on) I know that I am not depressed! I have been on a gluten free diet since April 2012 (when I was diagnosed Coeliac) and so he then said I must be eating gluten and that's why I'm ill. There is no gluten in my house and I hardly ever eat out! Offended wasn't the word. I simmered for a few days and returned to a different GP for a second opinion.

This GP, Dr. T, tested me for thyroid antibodies, among other things. I left for my holiday knowing that I would get the results when I got home....

On 1 June I went to collect the test results. The antibodies were 253. The lab note said 'result supports a diagnosis of autoimmune thyroid disease'. Dr T said I was right, I had Hashimoto's and that I should thank my nurse friend. He started me on 25mcg Levothyroxine. I started charting how I felt from the start of June: initially I felt awful, so after a few days returned to the GP and he said to go up to 50mcg. He requested an endocrinology referral and a neck ultrasound. I also started taking a vitamin supplement that included selenium at this time.

I felt immediately better with a higher dose. This dropped for a few days then returned and I had the longest time of feeling good that I'd had for a while (2 weeks). At the start of July I started to feel poorly again. I felt that this was because I was on 50mcg and that I would need a little more. Dr T was unavailable – so I saw a different GP, Dr C. He said I shouldn't even be on Levo and that Dr T was wrong. He refused to give me more, so I waited for the endocrinology appointment in July still feeling unwell.

My husband came with me to the endocrinologist, as he had also been reading about Hashimoto's. By now, my symptoms also included:

Out of breath

Chest pain

Dry skin

Hair loss

Acid reflux

Memory loss and muddled mind

The endocrinologist was rude, didn't answer our questions and contradicted herself. She told me I shouldn't be on thyroxine yet told me to stay on it, and to return in September. She said it was rheumatological and that I should get a referral. In the end she was refusing to answer us and just said goodbye with a beatific smile on her face. We were very upset and angry.

We both went back to the GP the next day and explained what had happened – we saw Dr J who had initially suggested a thyroid issue. He agreed with us and Dr T– and referred me to another endocrinologist and managed to get an appointment for me on 22 July.

This endocrinologist gave the same verdict, but was polite to us, understood our concerns and actually explained why I shouldn't be on thyroxine. He said until the TSH raises there is nothing they would do clinically. I do have a nodule on my thyroid gland (seen on the scan) but it's small, routine, and nothing to worry about. I pointed out information I had found on Thyroid UK about TSH being in normal range with Hashimoto's and (without using these words) said he thought that Thyroid UK's opinion on Hashimoto's was nonsense. He stated that autoimmune antibodies just mean I have a predilection for autoimmune diseases and for me that was Coeliac disease. He did say he would test me for Addisons and associated illnesses (these tests ultimately came back normal). He asked me to come off the thyroxine as he pointed out it would increase the damage of the osteopenia. He also said that anyone would feel better on thyroxine even if they don't need it and that explained why I had felt so well temporarily.

I returned to Dr T and explained what I'd been told. His body language suggested to me that he thought that this was nonsense but he couldn't voice that he disagreed with a specialist! He gave me an option – continue with the thyroxine and see what happens or come off it. Either way he referred me to rheumatology so we could rule that out. I decided to come off Levo, easing myself back down to 25mcg and then zero over the next 2 weeks. I did this because I was concerned about osteoporosis. It was 5 August when I came off the thyroid hormone.

Each month from then on I have felt worse each month. In August I had two separate weeks of feeling ok, in September 11 scattered days of feeling ok, and only 4 days of feeling ok in October.

Aching shoulders and arms have developed. I now have Insomnia and am aware that my sleep is poor due to a sleep app. However, I have also managed to lose some symptoms. I started going numb in my hands and face – once I recognised my anxiety about the situation and have got this under control these symptoms have gone. The pins and needles are also less frequent. I think this may be because my vitamin D is now at 100 and that I am also taking the multivitamin routinely. But the ache, fatigue, dizziness, poor memory etc are still there and are stopping me from being me.

I saw the rheumatologist on 8 October – he was very thorough and through testing and examination ruled out Lupus, inflammatory diseases and Sjogrens (my Mum has this).

Since 14 October I have been very ill – as ill as I was back in Feb-May. I have been signed off work since then. With nothing else coming from the rheumatology appointment Dr T has narrowed it down to CFS or Fibromyalgia. We are leaning towards CFS because the fatigue is far greater than any pain. On 19 Oct he prescribed Amitriptyline. First 10mg but now I am on 40mg. I don't feel any better at all. Which is what has led me to think that maybe we'd got it right in the first place....

Leaning towards CFS:

Some symptoms have changed. I've read of many people who have changing symptoms as they suffer from CFS. However, the increased vitamin D and selenium intake may explain the changes.

The fatigue is debilitating, especially at the moment.

I did have a tough year last year (Dad in hospital most of the year, my cousin's death, I was writing my Master's dissertation... and more) and this can trigger CFS. I took a short break from work due to stress in July 2014 and maybe this wasn't enough.

I have endometriosis and there is a high incidence of CFS among endo patients.

Leaning towards Hashimoto's:

There are a lot of people out there who have been misdiagnosed with CFS when they actually have Hashimoto's!

I have managed to lose some weight, but only by reducing my calorie intake to below 1000 calories a day. I am currently eating around this (I have no appetite) and staying the same weight.

I don't feel that this possibility has been explored properly. I don't think I should accept a diagnosis of CFS until I have pushed this one further. I accept that I walked away from it, but now I think I have ruled out most of the other options.

Having Coeliac already is indicative of additional autoimmune diseases.

Mum has Sjogrens – autoimmunity is in our family.

I felt better on Levo and increasingly worse each month after I stopped. Now back to feeling how I was at the beginning, when nothing made me feel better until I was on Levo.

Perhaps I should have stayed on the Levo when Dr T gave me the choice – but at that point I had been convinced by the second endocrinologist. My husband has not stopped thinking that it's Hashimoto's all the way through; I had to accept the words of the specialist so that I could move forward and rule out other causes. But right now I am back with a choice and I am not sure which one is most likely.

Has anyone else had the same situation?

Should I ask to try Levo again, and get further than 50mcg?

Does thyroxine make everyone feel better temporarily?

Is there anything else I can do to ease symptoms (assuming it's Hashimoto's)?

Have I missed anything I should be examining?

I eat healthily, gluten free because I'm Coeliac (I'm also vegetarian but eat lots of fresh veg and fruit, pulses and eggs). Don't have much salt, fat or sugar – only occasionally! My husband has to watch what he eats too so this is a healthy eating house.

I take vitamin supplement that includes: vit D, E, K, C, B1, B2, B3, B6, B12, folic acid, magnesium, iron, copper, zinc, manganese, selenium, chromium. I also take 2 x Calceos tablets (calcium and vitamin D) daily.

I've tried ginseng, but this made no difference.

I've just started vegetarian Omega 3.

I have an appointment with Dr T on Monday morning. We're both going, and I'm going to suggest that we revisit the autoimmune thyroid issue. I will ask for the thyroid measurements to be retested and I'll try and get an accurate record of what things have been previously.

Again apologies for the very long post but thank you in advance for your thoughts! :) Liz

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15 Replies

  • check this out.... And go back on the thyroid meds if it made you feel better.

    Xx g

  • Thank you - that is interesting!

    Will be useful if GP is more concerned about the osteopenia now.

    I hope I can try Levo again and give it longer and get to a higher dose - I was only on it for 2 months. I think I'd need to see what happens over at least 6.

  • Well, you are already taking vit D and most articles say that calcium is not generally what is needed to prevent it, but magnesium and boron, plus a healthy thyroid and adrenals.

    I'd say that you felt better on levo and worse when you stopped it, IMHO CFS is a made-up illness to stop them having to treat thyroid and adrenal problems - I'm with the late Dr Skinner on that. QED

    If you accept a diagnosis of CFS that probably means getting sent to stupid progressive exercise clinics, no proper treatment and probably losing your job.

  • Is it possible to get a copy from the surgery of your results for your thyroid hormones/antibodies with the ranges and post on a new question for comments.

    Your story is very familiar to many on this forum either for being undiagnosed (I never...

  • If you have another blood test for thyroid hormones, get the earliest possible appointment and fast. When/if you get levo leave about 24 hours approx between last dose of levo and the test. These three things help to keep TSH higher as it drops...

  • Good levels of Magnesium are key for your bones. Recent research says that calcium supplements often remain circulating and are not so readily absorbed and can cause heart issues. If you are dosing with VitD - that should help the absorption...

  • Ok, so let's assume that Dr T accepts that I have Hashimoto's (I'm sorry, I just CAN'T call it 'Hashi's' - yeuch!) and offers me Levo again.

    What happens long term?

    I've already met opposition within the practice as my TSH was within 'normal range'.

    I may well have an ally in Dr T but what if he leaves? Or is on holiday or sick himself one day when I need to go in for something else?

    I'd love to hear from other people who have high antibodies, 'normal' TSH and have successfully got their GP and / or consultant to accept that they have Hashimoto's.

    What are the best tactics to allow your treatment to continue?

  • Sorry, I just Don't understand your reasoning here. These are risks we all run. But it isn't a reason for not starting treatment. Grab what you can while you can. If Dr T disappears for any reason, you will have to face that when and if it happens. By then, the damage done by the antibodies will probably make it more obvious, anyway.

    If the worst comes to the worst, you could always self-treat, lots of us do, myself included.

    What happens long-term, if you Don't start the treatment, is that you will get steadily worse. Is that a risk you want to take? Do you realise what hell untreated hypo can be? Can you face losing your hair and your eyebrows - completely? Feeling as if you have flu 24/7? Risking heart attacks and kidney failure? Because that's what happens long-term. I can't help feeling that you are deliberately putting obstacles in your path by thinking like this. One day at a time, that's my motto. Well, one of them, anyway. :)

  • I am NOT deliberately putting obstacles in my way. Do you think I am stupid, wanting those risks? Of course I am aware of all of this - I have been reading about this disease since April of this year and therefore you should assume that I am more aware than you think I am.

    I have already explained that I am going to the doctor next week armed with the evidence I have collected thanks to some of the respondents here, plus what had previously.

    I am being practical - asking for examples of how others have got over this to help me out. It's obviously helpful to know how others in the same situation have done. It's not going to stop me on Monday, it will just be helpful to hear from them.

    You seem to suggest I am delaying treatment - I hope to get it at the earliest opportunity!

  • Hi Miniliz - if you want greygoose to read your reply you need to click onto the Orange button otherwise she will not receive an alert to view !

    I did post helpfully I thought - based on my experience - and I didn't receive a reply from you. I was the post about your concerns about PA and B12 being so low - do have a read when you have the time. :-) If you have managed to read my Profile then you will know of my bumpy ride to wellness - so the points I am sharing are based on my experience with Hashimotos - or AIT.

  • I am sorry if I you think I misjudged you. :) But that's how it comes across.

    Good luck for Monday.

  • Thank you.

  • Miniliz, I totally understand why your post is so long. I have more than one health condition also and have been doing a lot of research my own behalf, with no medical or scientific experience or qualifications. Curiosity and the need for some answers is my reason.

    I do have ( Autoimmunethyroiditis ) apparently. Diagnosed through T3/T4 testing this year. I was diagnosed as being Hypothyroid in 2000, based only on a blood test, result not known by me and my 3 symptoms then of progressive weight increase, hair thinning/loss, and heartburn when in bed at night, when there is a much longer list. being hyperthyroid has a different list. however there are many here and on the 2 other forums I've been on that all complain of similiar symptoms. most but not all seem to have 'brain fog' in common, especially those of us with brain injury. I could write a book on my research, I have the will but not the endurance to do so.

    One thing I have learnt is that autoimmunity is not restricted to the Thyroid gland, only, there are different antigen blood tests that can done relative to other parts of your endocrine system. I have PBC, cirrhosis and the usual causes of cirrhosis and hepatitis have already been ruled out for me. However, I have no explanations as to why I had a spontaneous aneurysm and brain haemorrhage almost 3 yrs ago.

    I do believe you are correct there is a link between your health conditions. on the Headway Community a few months ago I made a post, 'Find the links and make the chain' I'm also thinking given today's news about the Menopause and HRT that we all need to ensure we have a good hormone balance. it's all related to the Endocrine system.

    You do need to get to the bottom of your autoimmunity but you also need it proven to which part of your system it relates to. So many people are given antidepressants by their doctors for depression but it's a anti- frustration remedy we need! sadly that's down to the doctors who aren't yet as 'enlightened' as we are on this and other H U Communities. Don't however, dismiss out of hand the advice and suggestions made by the Admins and other members here, as well as takin into account what your brain (confusion) .... Mind (frustration) body (wellbeing) are telling you... stress is also one of the worst factors to affect our brains, minds, and physical health. Pm me if you want. I do hope you can get to the bottom of all your problems though.

  • Have you read the book Sop this thyroid madness,I strongly recommend you order it today if not.good luck i have a strong intuition you have thyroid autoimmune issues you may have to fight for a diagnosis .i was told i bloods were normal for tens years,diagnosed with fibro put on tranquillisers and beta blockers and blog pressure pills nne of which did any good. eventually i was told i had overactive thyroid and had it thyroid destroyed a few months ago.two weeks ago started on levo and i feel very very il now, heart just not working properly chest pain out of breath.

    i am considering giving it a little longer but if needs must will self medicate on NDT . you have options but you may have to fight for them.get the book and join Thyroid uk.

  • Thanks everyone for the responses; I've taken them all on board :)

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