Grateful for any advice

Dear all,

I am in a panic this evening as I think I might have dealt with this in the wrong way. I know that lots of you are really suffering with our bodies getting sick and when I read some of the posts on this site I think that I've had it very easy, but don't know how to deal with it now. I would be very grateful for any advice.

I am going to see my local GP tomorrow morning to explain what has been going on, but I am worried that he won't take me seriously.

For me, this started in about April. I had been feeling unwell for a while and had called my local surgery a couple of times to get an appointment, but as it wasn't an emergency, was told that they could see me in a week or so. My life is quite busy, as my husband works and lives in London during the week and my children are at boarding school, so I never know when I need to be where for any of them (my complete priority) and planning in advance is difficult. So, I never made the appointment. Anyway, I was in London for a couple of days (I used to live there) and was feeling horrible so decided to go and see a private GP that I used to go to for my children when they were little.

I was exhausted, my eyebrows and hair had been falling out for a couple of years, my face bright red...and I just wanted to ask him what he thought. He took some blood and called me the next day to say that it was all fine, I was sub-clinical hypothyroid (TSH about 6) and that taking 25mcg of Levothyroxine would sort it all out.

I started taking it and within a week I started to feel much, much worse. My body ached, I couldn't stop sleeping (I NEVER sleep between 3 and 6am), my headaches were worse, I couldn't get up in the morning and lots of other things. I went back and he upped my dose to 50mcg (where I am still) and referred me to an Endo who took lots of blood, sent me for various scans and asked me to come back.

The results were that I had positive ANA antibodies, anti-Ro antibodies, positive anti-adrenal antibodies, fibrotic thyroiditis and Hashimotos. He didn't want to increase my dose of Levo until I'd been to a Lupus specialist. I did this and all of the above was confirmed. He told me that I have connective tissue auto-immune..def Sjorgrens, but rash, photosensitivity, aches and pains and some lupus symptoms (but not confirmed).

I feel like I've come to the end of my private medical insurance (as it's a chronic not acute situation) with no clue about what I'm supposed to do next. I am taking Levo, Plaquenil (or new name) and have had steroid injections to help. I still feel absolutely exhausted and am sure that I'm not on a big enough dose of Levo to help (although recent bloods show TSH down at 2.4 (a good thing?)). I don't normally sleep, so when I do sleep for 10 hours at night and still am desperate to go to bed in the afternoon, I know there's something wrong.

Anyway, I have made an appointment for tomorrow morning and am scared that the GP is going to ignore me (because TSH isn't high enough for them to think there's anything wrong). I also think that they might be cross that I went down the private route and leave me to that.

I am really not sure how to deal with tomorrow. If he isn't kind, I might cry....again...and I really need some help from him in how to manage this. I don't want to be a hypochondriac, but equally very much need his help.

Apologies for such a long-winded email, but I know that you are all so wise and would really value your advice on what to say.

Thank you in advance. xx

9 Replies

  • Hello Puffyface,

    Welcome to our forum and sorry to hear about your autoimmune issues and that you feel so unwell.

    The goal of Levothyroxine is to restore the patient to euthyroid status and for most people that means TSH just above or below 1.0. Yours is now 2.4 so you still have room for improvement but this is still early days for you as Levo initially takes 6 weeks to saturate the body and then symptoms can lag behind good biochemistry by a further six weeks.

    Sometimes a low 25mcg starting dose can just make your struggling thyroid take a bit of a break and produce even less thyroxine than it was before you were medicating. You may find your symptoms improve now you are on 50 mcg.

    Do you have the T4 & T3 thyroid hormone results.? Post any further results re thyroid or nutrients/iron, complete with ranges (numbers in brackets) for members to comment.

    Also if nutrients are low, thyroid hormone may not convert well in the body.

    People with thyroid issues often have vitamin deficiencies and it is recommended that you have tests for B12, vit D, folate and ferritin as optimum levels are required to ensure thyroid meds are absorbed. Ask your GP or use link below for private testing.

    I'm guessing that your GP may not increase your dose as you are within range. If happens you can obtain private testing for all thyroid hormones in order to get a comprehensive picture of what is going on.

    For future thyroid hormone blood tests, leave 24 hours between last dose and blood draw, fast (water only ) and have blood drawn early in the morning when TSH is highest so you have more chance of being offered a med increase.

    It is important to take your pill on an empty stomach with a glass of water, 1 hour before food, 2 hours before supplements and 4 hours before calcium, iron or vit D supplements.

    Re your GP.... Just tell him you were in London and felt much worse so sort the help of a private specialist.

    Re autoimmune antibodies ... members find switching to a gluten free diet helps in calming the immune response pathways. You have a lot going on in your body with all those different antibodies and will benefit if you can lower antibody levels.p and any inflammation.

    Waking between 3 & 6am is probably due to your adrenal glands working harder to secrete cortisol as they compensate for low thyroid hormone. You may benefit from a small healthy snack either before bed or upon waking in the night.

    Optimal nutrients will support the adrenal glands.

    Puffyface, low thyroid hormone can bring a whole host of horrible symptoms and make you feel tearful, anxious and insecure. However once optimally medicated you should feel better.

    This following link explains the importance of vitamins and where they may be obtained. This forum is supported by the charity ThyroidUK. You do not have to join the charity to benefit from this forum but by doing so you will be supporting the charity and also entitled to various discounts when buying supplements, as detailed in the link below.

    Link detailing private testings.

    I hope you feel better soon. You have a lot to take on board so feel free to post any further questions.

    Two good reads are "Your Thyroid and How to Keep It Healthy" by Dr Barry Durrant Peatfield and "Root Cause" by Izabella Wentz.


  • Thank you. I don't know if you really understand how much you help us all, but I am incredibly grateful. X

  • Don't apologise for anything. You've gone elsewhere because you feel so ill and don't know who to turn to for the best outcome. We are all out on a limb if we develop a thyroid gland dysfunction and the doctors appear to be the least educated in the treatment other than looking at a dot on the piece of paper and not look and take note of the patient. Before the blood tests, the doctor looked at us (facial changes) took our temperature, family history, clinical symptoms and dosed us with natural dessicated thyroid hormones until well. We were human beings then not machines as it seems like these days.

    I'm sorry you are so unwell and with so many diagnoses I hope you will be looked after by someone very sympathetic and treat you as you deserve. Not to be kept underdosed due only to the TSH etc but to take account of your symptoms.

    We have another member who has multiple autoimmune conditions so maybe send her a Private Message. I will send you details.

    The aim of your doctor is to get your TSH down to around 1 or below whatever makes you feel much better. You need an increase in levothyroxine. Your GP should check you B12, Vit D, iron, ferritin and folate. If you have a blood test for your thyroid hormones, make the earliest appointment and fast and leave about 24 hours between your dose of levo and the test. Take it afterwards.

    You have many clinical symptoms which need to be relieved somehow.

    We have to read and learn and many on this forum self-medicate because their doctors have failed them and the unnecessary suffering is mostly avoidable if only they were trained better when medical students.

  • Thank you. I would love to know anyone else who has multiple autoimmune issues to speak to, but.....and this is PATHETIC.... not sure what private messaging means. I would love their details if you have time to send them to me. Pathetic, as I'm only in my 40's. I really need to get more involved in technology! This website has made all of this so much easier to deal with. x

  • You will find plenty of us here who have multiple auto immune issues - unfortunately we all seem to be collecting them lol! I have hypothyroid, lymphocytic colitis, spondyloarthritis and am positive for ANA. My sons have asthma, chronic migraines and severe psoriasis and coeliac, and my mum has Hughes Syndrome/Antiphospholipid Syndrome, so you see, these auto immune issues also seem to run in families. Clemmie

  • Lupus UK has a forum here on "health unlocked" also which you might find useful.

  • If you decide to cut out carbs, look into AIP- Auto Immune Protocol. A lot of people with auto immune diseases have found some relief using this diet. Just do a search on the internet and you should get several results.

  • Do not mean to be negative - however it seems GP's understand very little about auto-immunity. As others have said you can do your own Private Testing through Thyroid UK and the people here will help with the results.

    Supporting your body with all the supplements needed for good thyroid hormone activity ( converting T4 into the Active T3 ) is certainly a very positive step. I was diagnosed with Hashimotos in 2004 at 58 - and joined this forum 4 years ago. Here is where I have learnt so much and improved my health accordingly. I am now T3 only and have a tray full of supplements :-) I also had Crohns diagnosed at 27.....

    We never stop learning about the complexities of auto-immunity and here is a good place to pick up tips - hence I hang around ! A little tweaking here and there is often helpful.

    I have recently read - Sustainable Medicine - by Dr Sarah Myhill - an excellent read in understanding how to take care of your own health and learning about the right questions to ask. Am now reading Brain Maker - by David Perlmutter - a must read for those of us with auto-immune issues.

    So much to read and so much to learn - but hey it is possible to find wellness and you can do it too... Will look out for your posts - so keep asking questions and everyone will help.

  • Thank you all for your very helpful support. x

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