Need advice please, I'm losing my sh** :(

Hi lovely people, I'd like to apologize for the long post but I need some advice. As some of you might remember, I was diagnosed in March with a TSH of 227 , free T4 of 1.3 and antibodies almost 1400. So here's an update :) 

🔹I've been on 100mcg levo, and here are my latest results: 

TSH 95.3 (0.27-4.20)

T4 9 (12-22)

Vitamin D. 26 (50-174)

Antibodies not tested

T3 not tested 

Ferritin 18 (13-150)

Testosterone 1.9 (0.29-1.6)

Sex hormone bin. glob. 8 (32-128)

Testosterone/shbg 24.1 (<4)

I requested many tests, adrenals, cortisol, insulin resistance, androgens, T3, iron, iodine, and ultrasounds, and these are the ones I got. 

🔹 I suspect I have PCOS. Hair loss, terrible facial hair, weight gain, acne, skin problems, too much testosterone in my blood, and also I used to have longer but kind of regular periods but since on levo I haven't had my period for more than two months. I told everything to my GP , and she said "I don't have to do anything about it". But I don't want to end up with infertility or cancer. I don't take birth control pills either. What can I do? Do I need a referral to see a gynecologist? Or should I just walk in to the hospital? Also my grandmother and mother had their uterus taken out, and I said I was worried I had the same but she said this shouldn't concern me.. She said I don't have to do anything. 

🔹 I've been referred to the hospital radiology for a thyroid ultrasound but I still haven't received my appointment letter. I've been waiting for the letter for two weeks now.. What should I do? My thyroid is still huge and it's been like this for months and I constantly have nausea and it won't go away. She said I should give it time... 

🔹 my hair loss is getting really bad. It's actually ten times worse than a month ago.. My GP didn't say anything about it, I asked if I could start using a minoxidil containing hair loss foam (Regaine in the UK) , but she said I shouldn't mess with hormones , but it does not contain any... It's just a vasodilator.. She said my hair should grow back on its own but she did not prescribe anything except vitamin D so I don't know why it would grow back without any help. Instead it's falling out by handfuls... Any suggestions? 

🔹does anyone drink whey protein shake? I found one that's affordable and popular and gluten free, and I'm planning to buy one, any thoughts on this? 

🔹I gotta say, I'm feeling much better, I'm still very weak, and tired all the time, I'm still not losing weight, and my throat is terribly dry, my heart rate is still high, my back hurts a lot and my muscles are very weak.. My TSH is still almost 100. And I'm so tired that I have to be my own doctor, only without the right to do tests I would actually need.. :( some doctors have little or no idea how to deal with this illness and unwilling to refer patients to specialists. I also figured out that they tell us to take one pill a day for the rest of our lives and we should be fine , but don't take the time to educate themselves or dig for the cause of the illness. They tell us that we'll be chronically ill for the rest of our lives, that there is no cure and we should live with it. And telling this to a sick depressed person is almost like a death sentence.. They only put plasters onto the symptoms but never try to treat the cause, and help our body heal itself like it's supposed to... Anyway I truly hope that there is a possibility of healing and living a full life without taking ten pills a day, and I will be fighting to get well soon :)

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  • I think you've been thoroughly neglected by your GP.  l don't think for one minute 100mcg of levo is enough for a TSH of 95+!  And you're still symptomatic.  This is dreadful.  Really dreadful and neglectful.

    "Individual healthcare professionals

    Each individual healthcare professional that looks after you must provide a good standard of care. This is a legal duty and it's also required by the regulatory body of the professional. In the case of a doctor, this is the General Medical Council and in the case of a nurse at your GP’s surgery this is the Nursing and Midwifery Council. This means you can take action against an individual GP or other healthcare professional if they don’t provide this standard of care."

    citizensadvice.org.uk/healt...

    Your Vit D is woefully low, your T4 is low, your hormones indicate probable PCOS, your ferratin is low for someone who is hypothyroid (which may be contributing to hair loss).

    I think I would be writing a letter of complaint tbh, I think I would be looking at probable legal action with that GP - I would be hinting heavily to said GP that this and the GMC is the route I'd be taking.

    Your GP is setting you up for illness and a very low quality of life.

    Disgraceful.

    You need to get the GP or practice manager to chase up your appointment.

    You can get a full TFT from Blue Horizons - knowing your T3 would be very useful but there are so many things going on with you at the moment that you really need taking in hand by a decent endo.

    xxx

  • Has your GP mentioned how often she intends to re-test your blood and raise your levo?

  • Nadafaka,

    Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's) which causes 90% of hypothyroidism.  100% gluten-free diet may improve symptoms and reduce antibodies.

    chriskresser.com/the-gluten...

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

    Have you been on 100mcg since March or has your GP increased the dose to 100mcg since TSH result 100?

    You are profoundly hypothyroid and this is why you feel so awful and why your periods have stopped and you are losing hair.  Your dose needs increasing until FT4 is in the upper range and TSH is just above or below 1.0.  Symptoms will gradually improve, periods resume, and hair regrow, but it is likely to take months rather than weeks.

    VitD 26 is very low.  Supplement D3 10,000iu for a couple of months and then reduce to 5,000iu daily and retest in 6 months.  Take vitD 4 hours away from Levothyroxine.

    Ferritin is very low and is optimal half way through range.  Supplement iron with 500mg-1,000mg vitamin C to aid absorption and minimise constipation.

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

    ________________________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • I just read your first post here.  You say you moved to the UK 8 months ago.  Where did you come from?  Do you have a history of insect or tick bites?  Do you have a history of falling in a lake/river/the sea.

    To me, it sounds suspiciously as if you might have Lyme Disease (and co-infections) and possibly parasites too.

    Start by asking your doctor to test you for Lyme.  The NHS test is fairly useless, but there is an outside chance it might be positive.  If it is negative, you will have to pay for a private Lyme test.

    For parasites, especially blood parasites, see if you can find someone who does dark field microscopy (live blood cell analysis).  Also read up about parasite cleansing.

    If you are a Facebook user, there are some excellent Lyme groups on Facebook.

  • I hope it's not Lyme, but you definitely need answers and treatment. You must be feeling terrible with such significantly poor results. I hope you get the help you need. X

  • nadafaka, your hair-loss will also be due to your low iron. Have you had your B12 tested?

    Have you asked your doctor to refer you to an endo? She doesn't sound as if she's exactly on the ball. I think she's a bit out of her depth. 

  • I would suggest you ask for referral to an endocrinologist who specialises in thyroid issues. (You are entitled to this request) 

    Your TSH and antibodies are still very very high. You could do with specialist expert advice, rather than just GP who may be out of their depth. 

  • pcos is related to hashimotos and hypo.  it could all improve or stop, once you get proper thyroid dose.  Then look into diet and food sensitivities, to stop this apparent autoimmune issue, inflammation and wacked out hormones.

  • Dr. Mark Hyman and Isabella Wentz have great ideas on root causes and where to start.  

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