4 Autoimmune diseases and fed up

Hi All,

I hope you are all having a 'feel well' day.

I have hashis, PA,  Vitiligo and lichens schelrotis and I am going through the menopause.

Medications - I self inject 2ml Hydrox per week, take 100 mcg thyroxine per day and take vit D and folic acid.

 I have been feeling unwell since November last year.  I went to the doctor in Feb with pain in right breast and shoulder, he said it wasn't connected found a lump and sent me for breast screening (that was a scary wait) it turned out to be a cyst and I was told to take evening primrose for the breast pain.  The doctor gave me Indomatcin for my shoulder. 

I have also been very anxious, and had a panic attack which ended in me calling an ambulance, the room span around and my heart was beating etc.  I didn't go to hospital.  Doctor gave me anitriptoline which I have been taking.  I feel really weak keep getting dizzy and shaky, my hands and feet are cold and I keep coming over really hot.  I haven't had any more panic attacks but I have had 2 or 3 occasions where I feel like Im going to have one.  Its very hard to explain by I have to go toilet and my stomach comes up churns over and over.  I am very anxious, not surprising all of my diseases include anxiety as a symptom. 

I have spent the last 2 weekends in bed and am struggling to work etc.  I know something is wrong but have no idea where to go next.

My thyroid result are TSH 1.32 mu/L (0.35 - 5.5)  he didn't test T4 or T3

Folic acid was high 23.3 ug/L (3.4 - 2.0)Ferum Ferritin 110.1 ug/L (20 - 300)

Also high was Eosinophil Count 0.7*9/L (0-- 0.4)

Any help would be appreciated, as I am just so fed up with struggling through day after day.



12 Replies

  • I'm really sorry that you feel so unwell. Glad to hear that you take folic acid with the Vitamin B12 . I can't help at all with the thyroid problem. I do know that PA and thyroid often come together,as more than one auto-immune  illness is fairly common(my second one along with PA is arthritis.)  As regards the tummy problems, a gastroenterologist told me that patients with  PA can take it as read that they have either no stomach acid(Achlorhydria) or low (Hypochlorhydria) This causes the gut problems. The NHS have no treatment! At first I took Betaine hydrochloric acid with pepsin capsules. (Amazon)Then I discovered a water-based probiotic which was marvellous.(Symprove) Home-made organic raw unpasteurised sauerkraut has been a god-send also . (You can also buy it at health food shops. You must not cook it but eat it raw. Cooking destroys the good probiotic bacteria. ) My stomach problems have gone now.  You can google and find out a lot about this. 

    It is advisable to take Vitamin K together with Vitamin D .  (Google that as well!) 

    Dear Ollie, don't loose heart. I am sure that you will  hear from other people on this site who are far more knowledgeable than me. Very best wishes to you.

  • Some people feel better with a TSH of 1 or under when taking Levo/T4 - so you are around that figure.  However the TSH reading is only part of the story - and you do need the FT4 and the FT3 reading.  It could be that the Levo/T4 you are taking is not converting in the body into the Active hormone T3.  Are you able to have private tests done ?  If so check out Blue Horizon ....


    As you have Hashimotos it may help you to go gluten free to heal the gut and reduce the anti-bodies.  Gluten can cause inflammation in the gut which leads to other problems.

    Taking K2 with VitD is suggested as VitD increases the uptake of calcium from foods.  K2 directs calcium to the bones as it is not good to have it in the soft tissue or the arteries.  How much D3 are you taking ?

    I am not a medic - just a Hashi's girl with a B12 issue !

  • Hi Marz,

    I take 400iu of Vit D3 most days but leave some days free especially in the summer, how much K2 should I take?   I am going to try the Guten free diet, have just been shopping which was a real eye opener I didn't realise it was in so many foods its going to take a bit of a while to get into it. 

    I have just see my doctor he must have been in a good mood as he has made me an apt to see an Endo doctor.  When I said about the TSH alione is not the full story he was sympathetic but said that is the TSH is ok they will not test t3 and t4 and it was out of his hands told me I could get private tests done. He gave me some more anti depression pills and told I have a shoulder impingement.

    I was ok on thyroxine for 25 years or more then the PA come along it took my 5 years to get the balance of injections, thyroxine vitamins right and I was ok for a while then the menopause came along and it seems to have knocked everything out of sync agan, also before Christmas I was feeling ok and got a bit out of routine with my injections etc I was still taking folic acid but not injecting, I feel sure this has had an effect.  Its all so tedious and such a fine balance of hormones vits etc that I just don't believe its possible to stay feeling well for too long.

    You have been a great help in the passed Marz and again this time, thank you so much.



  • Hi ollie - a VitD dose of 400 IU's is very low and was quite possibly prescribed by your GP !  You will need to dose a little higher to obtain benefits - around 4000 IU's in the winter.  There is a website which indicates the dose required according to your test result .....


    Check out your measurement and use the table they provide for converting ....

    Your shoulder impingement could be due to low D and of course low thyroid hormones.  Muscles need good levels of T3.

    My computer is mis-behaving and I cannot link the Blue Horizon private Testing to you from the main website of Thyroid UK.

    Is your Endo thyroid friendly ? - from what I have read they mostly deal with diabetes and are about as much use on the thyroid as a chocolate teapot.  You can read the posts on Thyroid UK to confirm ....  They are restricted by Guidelines that have little to do with listening to the patient. 

    Louise Warvill - one of the Admins on the TUK Forum has a list of Thyroid friendly Endos - maybe there is one in your area.

    You may already know that some AD's can skew thyroid results.  Also that T3 was used to treat low mood in the 50's ....

  • Hi  Marz,

    Just thought Id let you know that you were right Just got my Vit d bloods back  45 mul ( 30 - 200) underneath it says may need supplementing if between 30 - 50, but not a word from my doctor just filed away!

    The help I have had on this forum is invaluable, I don't know where I would be now if I hadn't found websites like this.  I feel for people who are suffering and missing out on all the help because they cannot get online or some other reason.

    I will take a higher dose also start taking K2 and get a probiotic Symprove also advised by someone on this website.  I have just started gluten free diet, didn't realise how difficult and expensive it would be.  Hope I can stick to it, I like my food!

    Once again, thank you for you advice.



  • You will need around 4500 IU's of D3 and of course the VitK2.  I think the VitD comes in a 5000IU capsule.  Take them with good fats or your main meal as they are fat soluble ....

    Gluten Free is only expensive if you buy the Gluten Free foods that are in the shops.  I have sheeps' yogurt with those wonderful frozen berries from Lidl - or egg and bacon for breakfast.   Loads of salad for lunch with various bits and pieces and meat or fish with loads of veggies for supper.  I make liver pate and other spread like things - one with smoked salmon and white beans whizzed up with lemon juice, parsley and olive oil and have them on rice cakes for a snack. ( So I know what is in them ! )  Nuts too ......  I also make chickpea flour pancakes - just flour and water and off you go without whatever seasoning you fancy.  It is just a different mindset.  Reading that gluten molecules can cause inflammation in the brain was enough to convince me to be GF !!

    Don't forget to get your FT3 tested too - it is probably low and will cause problems.  Google Low T3 Syndrome ....

  • Oh Marz you sound like one of those good cook ladies, unfortunately I hate cooking and im not very good at it.  The problem in my household is that I have 2 kids and a hubby who all eat different foods and I usually just fit in with them as it saves work.

    I will persevere, I still have a lot to learn about what foods it is in, the chickpea pancakes sound nice I suppose you have to buy the gluten free flour?

    Can I ask how much K2 should I take?

    Thanks once again

    Ollie X

  • Chick pea flour is GF.  Garam is the name sometimes !  200mcg of K2 - I take the one by NOW as its GF !  You can put all your favourite spices or herbs into the flour ....

  • I read that high eosinophil count can sometimes be due to fish tapeworm infection.

    Fish tapeworm infection can lead to B12 deficiency.



    I am not a medic just a patient who has struggled to get a diagnosis.

  • Sorry to hear about your problems.

    I find that I need a lot of B12 - much more than the 2ml per week you are taking - though tend to do mine through nasal sprays with injections as the top up.

    Think that all the hormonal changes at the menopause really don't help - guess it is a bit of a double whammy - the B12 makes you susceptible to the 'stress' that the changes in hormones can cause.  I certainly found that keeping my B12 levels astronomic helped me ... and taking HRT for one day (following an extended bleed) really put me back to near ground zero on the B12 treatment.

  • Hi Gambit62, thanks for you time and advice.

    I thought I was on quite a high dose of B12 at 2ml a week, can I ask how much you take and what other vits you take?

    I was ok on thyroxine for 25 years or more then the PA come along it took my 5 years to get the balance of injections, thyroxine vitamins right and I was ok for a while then the menopause came along and it seems to have knocked everything out of sync agan, also before Christmas I was feeling ok and got a bit out of routine with my injections etc I was still taking folic acid but not injecting, I feel sure this has had an effect. Its all so tedious and such a fine balance of hormones vits etc that I just don't believe its possible to stay feeling well for too long. 

    Did you only take HRT for one day? sorry back to ground zero, did it knock all the b12 out of balance?

    Many thanks again for you time and advice, its much appreciated.



  • HRT - took progestrone for one day only because the side-effects were so bad - I'd  been given 10 days by the doctor though the pharmacist advised me that this was more than was needed for the reason that I was taking it - to stop a menstral bleed that just didn't want to stop - was low and not a risk of anaemia but was getting to me.  Hasn't recurred but if it did I'd probably try an even lower dose than I was given to try and stop it affecting me - it is known to have an effect on ability to process B12.  I got back from ground zero pretty quickly.

    At the moment I take 3mg adenosylcobalamin + 1ml hydroxo nasally in am.  May take 1ml hydroxo nasally at lunch time and take 2.5ml methyl nasally in the evening.

    if I've got a lot of activity or a stressful day then I might inject rather than take the hydroxo nasally in the morning ... so quite a lot of B12.  Nasal isn't as much of a big hit as an injection but it's still quite an effective way of getting B12.  I also take 1.2mg of folic acid and 50mg of B6 in the morning.  

    Note: B6 is something to be careful off - doses over 100mg a day over 6 months have been linked to neurological problems - generally they referse when supplementation stops but there have been cases of the problems not reversing.  I've also taken an iron supplement, a kelp supplement and glucosamine and chondroitin daily for many years before B12 was identified as a problem.

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