Would love to hear your thoughts? Hypothyroid!

Hi everyone!

Thanks for reading. Il try and keep this short!

I have been diagnosed for about 6 years now, following a miscarriage. After dealing with infertility for 5 years, I found out I also had low progesterone and with treatment in early pregnancy I was able to have my son (yay!).

I have no sex drive at all. I only have sex to please my husband (very rarely) and to conceive (sad truth). When I hit puberty i had the usual urges, and when I hit 15 I had sex for the first time. I have not once enjoyed sex. It has never felt good, and slowly over time the desire has disappeared. Maybe as Iv given up hope now?

I was also recently diagnosed as having moderate depression and severe anxiety, but that's a completely different story.

I am currently taking 50mcg levothyroxine (t4). My last blood test was in November:

T4 - 20.3 pmol/L. (Range 10.30 - 24.50 pmol/L)

Tsh - 2.17 mIU/L. (Range 0.3 - 5.50 mIU/L)

I have been told I have been requesting a blood test too often and unless there are any changes then to wait 6 months at least. I do have pretty much all the symptoms of untreated hypothyroid, and have since I started levothyroxine in 2000, but I'm pretty sure they believe it's all in my head.

Would love to hear your thoughts and/or experiences with 'treated' hypothyroid and no sex drive.

I know depression and anxiety play a big part but this was happening before I was diagnosed with them. Also not taking any medication for these, as having counselling instead.

Thank you xx

8 Replies

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  • Most people who do well on Levo have a TSH around 1.0. When my TSH was over 2 I was already suffering symptoms although I had to wait till it was much higher before I got a diagnosis.

    The problem with your tests is that they are testing the wrong thing. Free T3 is the measure of how much active hormone is available to your cells to enable them to operate properly. T4 is the storage hormone, with little effect until it is converted to T3 and measuring T4 does not tell the whole story. Not everyone converts T4 to T3 very well.

    'Depression' and anxiety are both symptoms of undertreated hypothyroid. Furthermore long term undertreatment often results in the adrenals trying to make up for the lack of thyroid hormone. And an excess of cortisol causes anxiety. So you may well recover if your thryoid is properly treated.

    In your position I would get a private Free T3 test (you can get a discount via TUK) to get a better idea of what is actually going on.

  • You might find this little (short) video interesting :

    vimeo.com/3818805

    I thought that testosterone was needed for libido in both men and women. Perhaps you don't have enough?

  • I had the same problem on Levo. It got better when I switched to Natural Dessicated Thyroid Hormone Tablets!

  • It seems to me that you are slightly undertreated. However your doctor probably won't recognise it. You could buy a version of NDT and take that instead of your 50mcg of Levothyroxine. It might help clear the depression too. You would need to start on half a grain, then increase to one grain after a couple of weeks. You would soon know if it was working for you. If it doesn't you could go back to the Levothyroxine, although you would almost certainly do better on 100mcg rather than 50. If it does work you can increase your dose every couple of weeks until you begin to feel overmedicated, then step back a dose. Apparently this is what doctors used to do before the blood tests were invented.

    Unfortunately this does mean financing your own treatment.

    Have you ever had your ferritin, Vitamin B12 and Vitamin D tested? These are often low in people with hypothyroidism and being low or deficient can stop your body converting T4 to T3 (the active hormone) efficiently.

  • You should have been tested six weeks after you started the 50 mcg levo, and your dose increased. 50 is just a starter dose. Then, six weeks after the increase, another test, and an increase, and so on until all your symptoms have gone - and lack of sex drive is a symptom of low T3, as are depression and anxiety.

    Your doctor knows less than the average about thyroid, I'm afraid. And that's saying something! Is it possible to change doctors and find someone that actually knows what he's doing?

  • Poor you, zc. Your low progesterone was already a sign, your anxiety depression another sign. Do these doctors need a bong on the head? It's incredible you have been stuck for six years when a little effort can put you on the road to healing. And they are telling YOU about testing? They aren't paying attention to the ones you have!!

    I hope your situation is one that you can do a few things to help yourself. It can be done. First you need a higher dose of hormone and it is fairly easy to obtain and not too expensive. If you can set up a test through your GP in a couple of months, that would help even if they don't want to increase your dose. Do it yourself. You are young and I'm sure your body is just waiting to be healthy. Don't hesitate.

  • Very interesting video Humanbean. ZCJ, I would suggest getting the pituitary hormones FSH/LH checked too. They are the ones that stimulate your sex organs into producing oestrogen/testosterone. In fact, since your TSH is low that suggests that all is not well with your pituitary gland and it might be worth having an across-the-board check including ACTH and GH as well. Pituitary damage is quite likely if you have ever had a head injury (about 30% chance) and concussion can cause it too - some studies put it at 16% though it is probably less.

  • Can I also just add then when you get your tests done it's very important to try and get the first appointment of the day between 8 and 9 am. Fast before your appointment only drinking water and do NOT take your meds for 24 hrs before.

    This will give you the most accurate levels of your hormones.

    You can always speak to the doctor say you have done research and ask if you can trial a dose increase.

    Good luck and I hope you feel well soon

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