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I am pan hypo pituitary so on all pituitary replacements including thyroxine as no TSH. I have been having a pretty bad time health wise this last year with a chronic UTI and lots of joint and pelvic pain. I am sure being slightly low on thyroxine is not helping , I have been taking 75 micro g for the last 17 yrs, i have always struggled with my weight and very dry skin.

I have not much confidence in my new endo unit since I have moved to this area, I think there expertise may be in diabetes rather than pituitary, at my last visit I told the registrsar I was anaemic ( ferritin of 8) had joint pain , weight gain , fatigue and dry skin which she noted. She only tested my free T4 whic was said to be in the normal range so no action was taken. I then visited my GP and asked for my T3 to be tested which he agreed to , but the results only came back for free t4, (I'm not sure what happened to T3. )

So I sent off to Blue Horizon, results below:

TSH - 0.02 ( to be expected as no pituitary)

FT4 15.99. (12-22)

FT3 3.47 (3.1- 6.8)

Ferritin is now 48 (20-150)

So my question is what do I do with these results? They seem a bit on the low side. Do I hope things will get better as my ferritin improves or do I ask for a higher levothyroxine dose, or peruse alternative options?

Thanks

Rachel

8 Replies

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  • Ratkinson,

    Your GP needs to note on your TFT bloods requests that you are hypo pit and need FT4 and FT3 analysed as some labs won't test FT3.

    There's plenty of scope to increase dose to 100mcg as FT4 is less than half way through range and FT3 is very low in range.

    Presumably you continue supplementing iron to raise ferritin?

  • Have you checked Vit D, B12 & folate too?

  • Yes folate 18.66 (10.4- 42.4) and b12 432. I haven't got a vit D as wasn't included in the testing package, but I already take calcium and vit D for bones so assumed that would be OK?

  • Folate and B12 are rather low.

    You might benefit from taking good quality vitamin B complex (make sure it contains folate not folic acid)

    Jarrows or Thorne are most recommended on here. Best to take early morning with breakfast.

    B12 needs to be absorbed in mouth not gut - Jarrows do lozenges. "Better you" do mouth spray.

    Only start one supplement at a time, waiting week or so to see how you get on before adding anything else.

    Are you sure you need the calcium with the vitamin D? Vitamin d increases circulating calcium, which is why we are recommended to also take vitamin K2 Mk7 - this sends the excess calcium to bones.

    Magnesium also cofactor for vitamin D. Lots of us find benefit from adding this too

    Selenium supplements can help improve conversion and reduce antibodies

  • Oh thank you, I was prescribed the calcium and vit d as I have osteoporosis, I have never looked into bones in much detail as I have usually been more concerned about my steroid levels. I' ll do a bit of reading tonight.

  • hi Rachel you may need to add some T3 as raising your thyroxine levels to the mid to high end of the range still may not give you enough FT3.I'm also hypo pituitary and am having an awful time with thyroid levels and dreadful symptoms.

    i have conversion problems and you may have too.

    Are all your other replacement hormones ok?

    How much do you take of the other hormones. Oestrogen, hydrocortisone etc? Are your levels good?

    When I take 100mcgs levo my FT4 is above mid range but my FT3 is tanked.

    If I try raising my levo higher in order to increase my FT3 levels I just get symptoms of over replacement.

    At my next endo appointment we will be adjusting my meds....again!....reducing levo and raising T3 meds.

    How on earth do you manage balancing ALL your hormones? I'm struggling with just oestrogen,thyroxine and partial acth deficiency.

  • Hi joes mum , I take 10, 5, 5 hydrocortisone, 75 thyroxine, small amount of desmopressin at night, fem seven conti hrt and .3 of growth hormone. I was really quite stable until last year when I had a DVT in my calf and they made me stop my tablet form of hrt. Every thing went totally pear shaped ,as well as having all the withdrawal symptoms from stopping the hrt I got weird symptoms that turned out to be due to my GH levels going well above normal range, then I got a UTI that I haven't been able to get on top of so I am now on high dose long term antibiotics . My bladder is my main problem at the moment, hence why I am determined to get my thyroid levels right as I understand they are important for helping the bladder heal and function ok.

    I started back on patch form of hrt a couple of months ago ( it doesn't go through the liver so safer in terms of DVT) so at least my horrendous menopause symptoms have stopped. Now I just need to try and get all my other levels back on track. If I had been with my old hospital I am sure I would have been sorted by now, but the Drs I see here have no interest at all and really don't understand how they all interact and really don't want to know, hence going down the private testing route. I am really just getting through just one day at a time.

    I think I need to have a chat with someone about t 3 , you seem to be lucky that your endo will consider it. I may try and speak to the nurse at the pituitary foundation she is brilliant and was the one that suggested that it might have been a problem with too high GH after stopping the Hrt .

    Hope you manage to get your levels sorted at least , at least you seem to have someone prepared to try and help you. Thanks for replying- I'll eep my fingers crossed for you.

  • My T3 levels are just tanked on levo only. At the moment I've been taking 100 levo which gives me a T3 level just above the bottom of the range. I don't seem to convert anything much really. Just a tiny ,tiny amount.

    I've always been lead to believe that Central hypothyroidism needs much higher doses for symptom relief. My endo has always said to me that I will need T3 in the mix. In truth on just 100mcgs levo I can't really get out of bed.

    I hope your endo is willing for you to try some. Either that or he will need to raise your levo substantially to get your FT3 level somewhere around 5.5 or

    6.

    I don't feel well at all with an FT3 below 6 but I mustn't have my FT4 high in range too or I feel dreadful and very hyper.

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