Adrenal problem / T3 problem? A dismissive private endo :-(

I had Graves, then RAI, then hypo since 1990, and pretty stable on thyroxine. But I've felt rough for over a year, had overactive symptoms eg exhaustion, fast heart rate, GP thought T4 a bit high, so reduced from 175, to 100 in the end. Felt very ill! Then discovered Vit D extremely low, it's now at top of range after treatment. Thyroxine now back up to 175 again. Still feel exhausted at times. Have a few good hours in the morning and again in the evening, but late morning onwards I feel weak, exhausted, internal shaking, very slow, restless legs. GP said slight possibility of lupus from 2 consecutive tests. In December I was so desperate, I paid for private rheumatologist and endo appts. They don't think it's lupus, but query an adrenal issue. No waiting for NHS adrenal and glucose tests, plus bone density scan. Endo didn't like me asking many questions! He said my TSH has been too low for ages eg 0.03, 0.27, 0.03 (range 0.35-3.5), so I may have osteoporosis! And "it's your brain telling you you have hypo symptoms!" Didn't go down well with me :-( And I was paying for that! Magnesium and B12 are fine, Folate and Haem are near top of range, red blood count high, but ferritin has been around 58 (range 23-300) for 18 months. I said I'd read that it should be optimal for T3 conversion, Endo almost snapped "it's fine." Free T4 has been around 20 (range 8-21). Free T3 has been between 3.7 and 4.2 (range 3.8-6.0) I asked if maybe I'm not converting to T3, and he almost snapped again that he was very happy with it. I sort of hope they find a cortisol prob now. I've had enough of not being able to even go to the shop some days. Anyone got any advice? Can/ should I somehow increase my ferritin, without other blood levels going too high? Anyone had adrenal/ Addisons diagnosis? Want advice before another hosp appt on Wed - a different endo!

Sorry this is long :-/

7 Replies

  • Given that restless legs syndome is associated with low iron, I think you could try taking your ferritin higher - over 60 is where one past study found women reported

    less fatigue, too. p Personally, I would take it up to at least 90, and see if the rls decreases, but it won't be immediate if it helps at all.

    Are you waiting for cortsol blood test results?

  • Thanks Aspmama, but if I try to raise ferritin I'm worried my other blodd results will go too high, and I know too much iron can be dangerous.

    My hair has got a lot thinner this year, but could be hypothyroid or very low Vit D too. Similar symptoms with all 3 conditions, and hard to tear them apart.

    Yes I think endo this week is ordering cortisol blood tests. I had to wait for NHS, I've spent so much on private appts.

    I don't think NHS do saliva tests..? Should I pay for one, as well as NHS blood ones?

  • Which results do you think will rise as a result of your storage iron going up to a healthier level?

    On the restless legs syndrome, what are your symptoms?

  • I thought red blood count or folate would go up if ferritin does? I know some levels can be dangerous. I was going to ask the endo, but he didn't want me to question anything. But I don't know enough about it.

    RLS - I've had symptoms for at least 18 months. Feels like ants crawling inside them. Mostly at night.

  • Have a google on johns hopkins restless legs. It has vg info, and they take patients up to 100 on ferritin because the current evidence points to low iron as its cause. If you have only had it for 18 mths you may be able to fix it.

  • TaraJr, Good levels of vitD and ferritin aid T4 to T3 conversion but I think you are a poor converter as FT4 is high in range but FT3 low. Your snappy endo may be happy for you to have low FT3 but I can assure you he would feel very unwell if his own FT3 was low. See whether your new endo will add some T3 to Levothyroxine. If not, you might consider buying T3 online and adding a little T3 (6.25-12.5mcg) to see whether symptoms improve.

    Reasons why RBC may be elevated are included in this link

    Low ferritin can cause hairloss. Ferritin is optimal >100 through to half way in range. Unless your iron is high in range you can supplement iron which should be taken with 500mg-1,000mg vitamin C to aid absorption and minimise constipation.

    If you type "adrenals" and "Addisons" into the HU Search box you'll find posts on the subjects.


    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.

  • you are not converting well.

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