Hashitoxicosis

Hi everyone,

I am new to this forum and just starting to realise that what I thought I knew about thyroid results and what I thought my doctors knew is just all rubbish. I don't know if I'm just feeling down in the dumps or feel poorly in myself but I think I may just stop trying to find answers. Sorry if this sounds a bit depressing but if I may explain a little about my situation and my concerns.

I was diagnosed in 2010 with an underactive thyroid where my serum thyroglobulin level was 27.0 ug/L (1st question - is this the same as your TSH?). Thyroglobulin autoantibodies were 307.4 ku/L (<46 states 'abnormal). (Don't know what this refers to). My GP started me on Levo 50mcg and increased gradually until I went as high as 175mcg in the years between then and now. I now take 125mcg. My TSH results have fluctuated between 0.18 and 18.0 during this time. throughout this time I trusted my doctor and then last year in February I started having anxiety and heart palpitations and took some time off work. My results from this time are as follows:

Dec 2013.

TSH 0.05 (0.3 - 4.7)

Free T4 17.0 (9.5 - 21.5)

Free T3 4.3 (3.5 - 6.5)

March 2014

TSH 0.05 (0.3 - 4.7)

Free T4 22.3 (9.5 - 21.5)

T3 weren't read

I was told I had anxiety and depression and due to horrible mood swings and, I admit, total irrational behaviour. I don't think I have depression but have been of Venafalaxine now since that time. Doses ranges from 150mg to what I have weaned myself onto now one 37.5mg tablet halved every other day. The problem is when I stop taking them I go like a crazy person again so I am reluctant to stop completely. Also I have gained 2 stone in weight in the past year, this is really depressing me as I am an active person.

I asked to be referred to an Endricologist where I attended 2 weeks ago and my results are:

TSH 0.41

Free T4 16.8

Free T3 3.9

I was told I have Hasimotos (wasn't aware of this previously) and it could be Hasitoxicosis.

What I would like to ask is if anyone reading my results can offer any insight to what it all means and what could be causing my weight gain and mood swings please? Also whether I would benefit from adding T3 as he is willing to do this?

I am trying to help myself by going gluten free as I've heard this helps?

Any advice or experiences would be greatly appreciated.

18 Replies

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  • I am sorry you are having all these additional symptoms. When we are first diagnosed and if we hadn't any of these previously, we don't know what on earth is going on. We have been given medication which we assume will bring us back to normal but, for many, it doesn't and it just seems to exacerbate our symptoms.

    At least you have been told you have hashimotos which is an autoimmune disease and is clarified if you have antibodies in your system. So you can swing up or down but at least you were prescribed levothyroxine which helps to damp down the antibodies but eventually you become hypothyroid and the symptoms change again.

    Anxiety, mood swings and depression are also clinical symptoms. Some of us feel better when some T3 is added to a reduced T4. As T3 is the active hormone required by all our receptor cells maybe T4 isn't converting sufficient for you to feel better. T3 can also be used as an anti-depressant as our brains have the most T3 receptor cells and it appears to work quite well.

    evolutionarypsychiatry.blog...

    Your blood tests look o.k. but we cannot really go by them if we are still unwell. Some of us cannot recover our health on levo but do improve when T3 is added. Maybe ask your GP to consider some T3 on a trial basis added to a reduced T4 (levo).

    I had constant palpitations on levo. My heart would jump into extra activity anywhere and at any time without warning. Not pleasant.

    Ask your GP/Endo to consider adding T3 to a reduced T4. The more I reduced levo and increased T3 the better I became. We should be able to trial several alternatives if not improving in health but the BTA don't approve. So we go on and on. Some have to resort to self-medication but it is not the preferred route so phone your Endo's secretary and ask if he will give permission to switch from Venafalaxine and trial T3 for a while with the levo. I think Venafalaxine may have to be reduced gradually.

    Levothyroxine doesn't suit everyone and it is now about 5 years for you, so I think that's a long enough trial and I don't think you've improved at all according to your first sentence.

    Regards

  • Thank you for this helpful post Shaws. I do just try to get on with it and I think my doctor thinks I'm a crazy person. They just seem to give you the minimum info and let you get on with it. I think I will definitely ask for a trial of T3 and as you say it has been nearly 5 years.

    I will keep you posted of my findings with T3 and hopefully this may help.

    Thanks again.

  • Welcome to the forum, Mitchem.

    The elevated thyroglobulin antibodies means you have autoimmune thyroid disease (Hashimoto's) which has attacked your thyroid and made you hypothyroid.

    Hashitoxicosis means you may be experiencing hyperactive symptoms ie racing heart, palpitations, breathlessness, jitters, anxiety and mood swings at the same time you are experiencing hypothyroid symptoms ie weight gain, fatigue, depression etc. Gluten-free diet can be helpful for many people, although not all, and can reduce the Hashi flare ups and reduce antibodies.

    Your recent thyroid results show your FT3 is low in range and you will certainly benefit from the addition of T3 to your Levothyroxine. It's usual to reduce Levothyroxine by 25mcg for each 10mcg T3 added as T3 is 3 x more potent than Levothyroxine. Improving FT3 will help resolve hypothyroid symptoms and can be hugely beneficial in improving depression and anxiety. When your FT3 level is good you may feel able to wean off Venlafaxine but don't rush to do this. Baby steps and all that.

    You should also ask your GP or endo to check your ferritin, vitamin D, B12 and folate. They are often low or deficient in hypothyroid patients and good levels are necessary for absorption of thyroid meds and conversion of T4 to T3. Symptoms of deficiency, musculoskeletal pain, fatigue and low mood are similar to hypothyroid symptoms.

    thyroiduk.org.uk/tuk/about_...

    thyroiduk.org.uk/tuk/about_...

  • That's really helpful advice also Clutter. Thank you, and now at least I can go armed with some info to challenge my GP.

  • I have Hashis and have experienced all you have said. I had an awful 2014 but thanks to all on this site I've improved greatly but still have a bit to go. I'm into my 5th month gluten free and supplement with B12 sublingual B12 complex cod liver oil magnesium and calcium I take lglutamine probiotic and digestive enzymes. Your antibodies cause your hashis you have to heal your gut to get those antibodies down. I know how bad a flare is and the anxiety that comes with it is awful. I have had a disaster for an endo who told me it was all in my head and I needed to seek professional help. Thankfully I've proved him wrong and it is the hashis that cause all this disruption to our bodies. Try the gluten free for a couple of months it has helped me with all the supplements. I hope you get your GP to add T3 and that it will help you. Best of luck. Maud's

  • Maud I really doubt that they know what effect the T3 has on the brain. If we don't have sufficient nothing in our bodies functions well and the brain has the most T3 receptor cells of the billions we have in our bodies. They all have to have T3.

  • You are right Shaws I have my first visit Monday with private endo I've heard great things about her so I really have my hopes pinned on her. Hopefully she will be able to get my thyroid better. Thanks for all the good advice.

  • Crossed fingers for a good consultation.

  • Hi Mauds, Many thanks for your input and experiences. When you say a 'flare up' what does that mean? I sometimes don't know how I'm feeling. Psychotic my husband says!

    My GP spoke to me earlier and has agreed to test the ferritin, vit D, B12 and folate so that'll put my mind at ease that hopefully I'm not missing any important minerals etc. she needs to speak to the endo regarding adding T3 as she admitted she didn't know how to. I'll keep a note of your supplements and see what the results are before I try anything.

    How are you getting on with gluten free? I am finding it quite easy to be honest, just missing beer! Haha. Glad you're getting there and thank you.

  • A flare up for me means I go hyper from what I've learned the antibodies attack your thyroid so it releases hormone then you get overactive as your taking meds also. When I flare my symptoms are awful anxiety insomnia loss of appetite tremors fast heart and palps. I was told by my endo to see a psychiarist that it was all in my mind as I said thankfully I proved him wrong and will never go back to him again. What you're going through is awful and no one will understand unless they're going through it. This site and all the lovely people on it are a godsend I am so glad I found it. I hope the gluten free helps you and I wish you all the best. If you want any questions answered and I can help don't hesitate to message me. You're in contact with people who I think have more knowledge than any doctor or endo. Take care Mauds

  • Hi again, I hope I'm doing this right by keeping it all on the same related thread.

    Just an update really. I acquird my blood results from the hospital visit earlier in the month and I do think they look fine. As follows:

    Random glucose 4.8 (>11.1 mnol/L consistent with diabetes. Between 7.9 mnol/L and 11.1 mnol/L reflect impaired glucose handling.

    Cortisol 9am 531 (190-650). He wouldn't do the saliva test

    Thyroglobin receptor antibody <1.0 IU/L (1.0-1.8 regarded as positive)

    Vitamin D 42 nmol\L. Between 25-50 May be deficient

    Ferritin 76 ug/L. Within range as >60 ug/L indicates deficiency unlikeyl

    Can I ask if these look correct please? I have just had my bloods taken for B12 and folate today to.

    Regards

  • If you want to do a saliva test for cortisol you can do it privately, but of course you have to pay. I don't know how to interpret cortisol blood tests, but I do wonder under what circumstances the test was done. There is a pronounced circadian rhythm to cortisol production, so the time of day you had the test matters. Also, had you eaten beforehand? Drunk tea or coffee? Had a stressful journey to get to the blood draw? All of these things make the blood test unreliable. This is why doing the saliva adrenal stress profile is preferable to a blood test. You control the circumstances of the test yourself, and it gives an indication of what cortisol you are producing at four times during the day and evening.

    Referring to your vitamin D, it is impossible to be sure without reference ranges and units, but just for comparison, here are the ranges for my last NHS test :

    Less than 15 nmol/L : Deficiency

    15 – 50 nmol/L : Insufficiency (consider supplementation)

    50 – 140 nmol/L : Adequate

    And the ranges for my last Blue Horizon test were :

    <25 nmol/L : Severe Vitamin D deficiency

    25 – 75 nmol/L : Borderline ranging to insufficiency

    75 – 200 nmol/L : Optimally replete

    >250 nmol/L : Possible toxicity, if sustained

    Using both these ranges your level appears to be inadequate (assuming your result is in nmol/L - if your units are different then ignore this).

    You will probably feel better if you improved your vitamin D to around 100 or even a bit higher. The supplements to use are vitamin D3 supplements (NOT vitamin D2). They aren't expensive and are easily obtained online or in supplement shops. You probably need about 5000iU per day for a couple of months, then re-test. If your levels have risen enough you could reduce your dose to 2000 iU - 3000 iU per day to maintain your level.

    With regard to your ferritin - without the units and the reference range it is difficult to say if your level is okay or not. The reference ranges vary quite a bit. But I don't think your level is bad.

  • Thanks for your input Humanbean. I have edited my results to include the ranges and it does look like insufficient vitamin D so will address that with my doc. The iron does look ok.

    With regards to the cortisol it was 9am on an empty stomach with no meds or stress getting to the hospital so I don't know whether to pay private as they point blank refuse to do a saliva test. I may just leave it as it looks pretty high to me. Do the numbers drop that much if you do not produce enough throughout the day? I'm pretty clueless about this aspect.

    Thank you very much for taking the time to reply.

  • You have an autoimmune disease causing your thyroid levels to go low. You have to slowly wean off the Antidepressants. If that is the same as Effexor, they have terrible withdrawal symptoms and you have to wean off slowly and wait it out until they go away. I think they were designed to make you feel you have to stay on them. The drug companies want your $.

  • Hi Faith, I am doing that slowly by cutting my 37.5mg tablets in half and taking every second day. I did try tapering it off and stopping completely but felt dizzy and light headed so started the lower dose again. Hopefully when I get T3 I will have the confidence to come off the antidepressants completely as there will be some t3 floating around my body to help the mood swings etc.

    That's my thinking anyway.

  • You are having these "mental" issues, i am sure due to having Hashimotos. It seems to be very common. The doctors don't want to understand this disease and give out psyc. meds rather than thyroid hormone. Really, we need to be addressing our immune systems.

  • Faith, thank you. I've come to that realisation too.

  • I had to. Wean off xanax after being on them since April had horrible time getting off them but thankfully I got there. There is nothing wrong with your mind it's the hashis playing havoc with your body. The xanax did help me greatly I don't think I would have got through my worst period without them. Hope you feel much better soon. Best of luck. Mauds

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