Confused - low Free T4 and low Testosterone

Hi, I have been feeling ill for over six months with fatigue (e.g nearly falling asleep at the wheel driving or really falling asleep at the computer or anything sitting still for more than 30-40 minutes), generally feeling tired. Also have had pins in needles in hands/fingers at night. My family have reported my memory is bad. My GP has been monitoring my thyroid function over a couple of years and noticed that the Free T4 has been dropping every time I had been tested but TSH has been normal. Eventually three weeks ago the FT4 dropped to about 9 and she started me on 25ug Levothyroxine sodium. Since then it has gone up to about 12 (which seemed like quite a rapid change for such a small dose)- this is the highest it has been for years. However, since starting I have not felt that well, have not noticed any difference with tiredness but have felt a bit dizzy (felt like I was going to pass out). GP carried out more tests (pretty much everything you could tick in the boxes) and has noted that everything else normal but testosterone about 8 nmol/l (normal 9 or above) - I am a guy. GP's best guess is some kind of pituitary problem and has referred me to endocrinologist.

I am still taking the levothyroxine sodium. Have others felt strange when starting? I do not seem to be showing any symptoms of over dosing (e.g. heart rate is still reasonably slow at about 60), but I definitely do not "feel right". I am sure some of my fatigue symptoms are also due to low testosterone so I might not expect that to get better. Not sure what I am really asking for here - I guess just seeing if any others have been in the same place and if feeling strange (sorry to be vague!) is normal when starting even a small dose of levothyroxine sodium.

Martin

4 Replies

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  • I'm going to leave other, more knowledgeable people, to comment about your thyroid results and experiences with Levo.

    However, I can't let mention of extreme fatigue and pins and needles pass by without drawing your attention to Pernicious Anaemia / B12 deficiency. Have you had your B12 and folate levels tested? There is a symptom checklist here:

    b12d.org/b12-signs-symptoms...

    And lots more information and links here:

    b12deficiency.info

  • Hi, I would guess that apart from any thing else, your thyroid is really quite bad., and that the GP has just been going by TSH, a modern idea and certainly would not do for me. My TSH is immeasurable! When you start treatment, it as to be slow for safety reasons, potent drugs. However, you do not mention a copy of your bloods. Essential to always ask receptionist for a print out of your blood tests with ranges ( differ at different Labs).For thyroid you need tests for TSH, T4 and Free T3, T4 when the treatment is correct usually top third of range, Free T3 near the top ( never over). This may need adding T3 to the Levo too. It is early to say now. To start with bloods every 6 weeks ( on line if GP difficult), then followed by rises in meds. It often takes a year.

    The other urgent test you need is Vit D ( hormonal), If low then corrected calcium on a script, retest 3-4 months, then about 2 a year., both.

    There are other autoimmune, hormonal tests that the Endo will routinely do.

    Testosterone, can be treated. This is all Endo.

    It would also be worth having an ironferritin test done, but probably GP did it. ( print out). if not ask them also to write on the top of form for the absorption %, very useful. Iron/ferritin should be well in range, not too high though.Endo does test that.

    If your appointment is not soon, then phone secretary and ask for an urgent one. Take latest bloods with you. Remember if not happy with a consultant, always find a good one yourself and ask for a new referral

    The Endo should do the "proper" cortisone test for the Pituitary gland, at home, 24 our urine test. My Endo says this is the only one any use. GP`s normally just do a blood test.However, most Endo`s prefer to get the thyroid right first, although test, then retest to see if cortisone needed to treat, when thyroid better..

    Best wishes,

    Jackie

  • Levo reduces TSH and that can affect your own production of all Thyroid hormones.

    If you're on a low starting dose then this will not be enough to pick you up and if not converting ,even worse. This is why T4 therapy is difficult, even if tolerated well.

    Further Testosterone is affected by low Thyroid and is itself involved in processing this same hormone- so something of a vicious cycle to the unwary!

    Jackie offers good advice above- so gauge your teatment and Endo carefully and stay ahead of the game by checking up on experiences here- and that should help.

    Adrenals are also important to check in all this- as part of the linked chain.

    A longish game, this - but the problem does take a while building through life, for most.

  • Your story sounds very similar.

    When my symtoms are at their worst I get pins and needles, dead legs, arms etc whilst sleeping. Throbbing muscles/joints whilst trying to sleep at night.

    I have had a foggy head, jumping read light etc (dangerous)

    I've also got low FT4 11.6 but slightly raised TSH 3.1 (has been 5.7). Your level is definitely below range, hence why GP started treatment. BUT I'm suprised they started treatment without knowing what the Free T3 was. How does the GP know you are or are not converting T4 to T3 properly?

    I have over range FT3. Even taking 125mcg of T3 did very little to the symptoms. So I have a problem using T3 in my cells. Endo says I am unlikely to have a thyroid problem (which I don't think I do) but I do have a problem with the pituatry gland requesting the correct amounts and my cells absorbing it.

    I just recently saw the endo who also said about pituatry problem. I had a DEXA bone scan and now find I have osteorporosis of the spine. I have broken many finger knuckles, no major bones and have complained of lower back pain, knee pain and now tenis elbow pain (and wrist pain lately) to the GP for years.

    My muscle strength is dropping with more pain of muscles during exercise, my weight is going up and I have over range estrogen.

    Testosterone of 8nmol is low. I think 13 is low for me. I think men need as much testosterone as makes them feel well. We might be males who do better with more, some men can do with very little levels to feel well. I've love to get mine to 23nmol (goal)

    Please note that low testosterone (and all your other hormones) will lead to a gradual loss of male characteristics. Strength, stamina and others etc.

    I'm 45 and I've been feeling worse and worse each year since 30 and I only took notice when I got more and more fatigued. Normally I brush it off, but it's all too frequent now.

    You definitely need to get a Free T3 measurement as well as FT4 and TSH. You need to do a full thyroid profile. (Your GP / NHS will not get all the above done)

    I think you need to see a endo as well.

    Research/research/research.

    Good luck.

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