Puzzled by my readings. Help!

I would be grateful if someone can help me here.

Two years ago I was diagnosed with Hashimoto's and have had incremental increases in levothyroxine. However, my T3 was always below range. My reading in August of last year and when I was on 75mcg of thyroxine was:

Free T3 3.8 (4.0 - 6.8)

Free T4 18.6 (12.0 - 22.0)

TSH 1.8 (0.27 - 4.20)

Clearly my T3 was below the range. I increased my thyroxine by 12.5mcg three months ago as I was still having symptoms of hypo: constipation, dry skin, hair loss and feeling cold.

Today I received my recent readings and was astonished to find the readings are now:

Free T4 25.3 (12.00 - 22.00)

TSH 0.55 (0.27 - 4.20) !

No T3 was done by GP.

Vitamin D2: <7 nmo

Vitamin D3: 131nmo

Serum Vitamin D: 131nmo (25.00 120.00) !

Serum Ferritin: 123ug (13.00 - 150)

Calcium: 2.54mmo (2.20 - 2.60)

I take Calcium, D3, Iron, K2, supplements as well as a good multi vitamin and it seems that my vitamin D is over the range. I will cut back.

I cannot understand how my T4 could increase so much when I only increased the thyroxine by half a 25mcg tablet and I am still getting symptoms and in particular hair loss, eyelash loss and feeling cold. Could it be because I have been taking supplements over the last eight months? The reason I increased the thyroxine dose was because from the earlier readings my T4 wasn't converting to T3.

My GP has arranged for me to go back to the endocrinologist who I saw last year and hopefully they will take a T3 reading. But I am puzzled as to what is going on.

Could some one please offer an explanation for me. I'm trying so hard to get my diet right and everything else - I really feel its one step forward and two back.

14 Replies

  • Well, I suspect you're still not converting. So to protect your body from the excess, some of that Levo you're taking is probably being converted into reverse T3, which isn't an active form of T3 - but it blocks T3 receptors at a cellular level, meaning your body can't make best use of the T3 that your body is managing to make out of the Levo you're taking.

    As a poor converter you probably need liothyronine prescribing. It would be very interesting to see an FT3 result but as you know, those tests just don't routinely get done.

  • Thanks for replying. I hope to get a T3 test when I see the endo. I don't know exactly when that will be but my GP has arranged for the appointment.

    Oddly enough when I did increase my dose I did have less hair loss.

  • If you're not converting, adding more T4 isn't going to make you convert. The T4 is just going to pool in the blood and/or convert to rT3 and make things worse. If that were me, and I was self-treating, I would come off all T4 and just take a largish dose of T3 for a while, and see what happens. But, of course, I Don't suppose the endo will see things in the same light. :(

  • What you say makes sense. However, my GP will not prescribe T3. I'll wait until I see the endo as they usually do bloods that include T3 levels. I'm hoping that if they see I'm not converting they will, hopefully, suggest adding T3. Thanks for yur advice.

  • Well, they might not suggest it, but you could try asking and telling them you're not converting.

  • I most definitely will. If its one thing I'm learning its don't wait for them to offer any substantive support. My last GP couldn't give a toss and more or less told me to get on with it - raise or lower my dose as and when it suited me with blood tests. Thankfully I've found another GP (within the same practice) who is a little more sympathetic although has to work within guidelines but is willing to do what she can.

  • I meant to say without blood tests.

  • We-ell, that is what I do. I just go by symptoms.

  • Yes, of course, symptoms are important - blood tests don't always reflect the symptoms.

  • Have you ever had your B12 measured? If you haven't then it would be well worth getting it done. B12 is one of the things I believe is necessary for conversion from T4 to T3 to work properly.

    I agree with greygoose about rT3. If you have high reverse T3 then going on to T3 only might be just what you need. It isn't an easy option though, particularly at the start while building up the dose. (I'm speaking with the voice of experience - I had very high rT3, went on to T3 only, but had to increase my dose very quickly just so that I could walk and talk. It was well worth doing though, and I have no regrets about it.)

    What is your diet like? Do you eat gluten? If you do, seriously consider going strictly gluten-free for 6 - 8 weeks. If it does nothing for you then you can always go back to it, but for some people (me included) the experiment is life-changing. I wouldn't go back to eating gluten again.

  • Hi Humanbean. I'm very strict about diet. No wheat or gluten foods, high proteins (for hair, skin) low carbs and plenty of vege and fruits, nuts and oily fish. I take supplements: D, Calcium, fish oils, iron, C, multi vit and mineral, evening primrose oil (hair). Had to cut back of D and calcium as readings are high. I have noticed that since I changed my diet my readings of TSH and T4 changed dramatically. That shocked me and convinced me that I must be doing something right.

    However, since adding the extra half of 25mcg hair loss has slowed down although still occurring. Dry skin not as bad but still dry and also depression is still there.

    I did read, I believe, Dr Toft's comments on TSH suppression and high levels of T4 can sometime go beyond range if symptoms improve but he did say that must be in conjunction with T3 in range.

    I have also read a great deal about Dessicated Thyroid and am really tempted to follow it up. But it seems so difficult to obtain as GP will not entertain unfortunately.

    I must admit reading the comments here I have learned so much - so much more than what any healthcare provider has told me. And that has really surprised me - that they know so little. Reading some of the comments is really heartbreaking. But there are some success stories too which are uplifting. Many thanks for for input - really appreciated.

  • I self-treat as much as I can these days, although there are limits on what I can afford/achieve myself. So much quicker and easier, and I don't get patronised and condescended to in the process!

  • This is still a learning process for me but then I suppose you never stop learning about this condition.

    It's quite scary trying to understand what is happening to you - the effects of too much T4 and RT3 inhibiting T3's role.

    I note your point on B12. I think I'll just buy some and start taking them.

    How long did it take for you to adjust to T3? How did you do it?

    I wish I had your confidence to self treat. I'm still learning. I've followed up on some comments here of those already taking dessicated thyroid and it really sounds interesting and it's such a pity that it's unobtainable on the NHS and I know its expensive to get privately.

    Everything I read now on the subject I write down. After reading yours and Greygoose's comments I'm going to ask the Endo to give me T3 because thyroxine isn't working for me and I'm sure its given me tinnitus.

  • The best B12 for most people is methylcobalamin. Jarrow are a popular brand if you want to search the forum for comments. It isn't toxic, so going over the range isn't a problem. You just excrete the excess. If there is any chance you could be suffering from pernicious anaemia, please get your B12 tested (and check the result) before you start supplementing. Once you start supplementing with any form of B12 it makes it much harder to get a diagnosis of pernicious anaemia.

    Regarding self-treating... I was terrified to begin with but since I knew I would never be treated properly by the doctors I felt I had no other choice. My TSH never went above 6 and my GP wouldn't diagnose. I got a diagnosis from Dr Skinner just before he died. But my GP ignored that.

    I took to T3 really quickly. It was/is amazing stuff. I had high RT3 though, and once that had reduced I ended up over-medicated. I cut down dramatically after that, and have never needed really high doses again.

    NDT can be expensive, but there are several different brands and they vary in price quite dramatically I think.

You may also like...