Any advice for Endocrinologist appointment?

Hello there,

I was diagnosed with Hypothyroidism in May, since then my symptoms have been getting worse and worse (complete exhaustion, muscle aches, feeling cold all the time, amongst others). I convinced my doctor to refer me to an Endocrinologist and I now have an appointment in a couple of weeks. I don't want to waste this appointment so i am looking for any advice on what to ask.

My latest Thyroid function tests are:

TSH 0.03 (0.35 - 5.00)

FT4 14.6 (9.0 - 21.0)

TT3 1.9 (0.9 - 2.5)

The lab didn't test my FT3 even though I asked for it, no explanation given. I shall be asking the endo to test that.

My TSH is low which is good and I'm so happy to have found a doctor who is okay with it being at that level.

My FT4 and TT3 levels I'm not sure about, do they seem to be as they should with my TSH levels or am I maybe having trouble converting T4 to T3, any ideas?

After doing some reading and getting some advice from the lovely people on this forum I have had various things tested:

Ferratin 76 (15 - 200)

Folate 15.1 (3.1 - 20)

Vitamin D 79 (>50 is adequate)

Vitamin B12 237 (200 - 900)

I felt this was a little low so started taking a 1000ug B12 supplement but I'm not sure it made any difference.

I also got a result for 'Thyroid Perox, ABs' 724 (<<6), I have no idea what this means and didn't get the chance to ask the Dr, does anyone know what this means?

I thought there might be a problem with my adrenal glands so they tested my cortisol:

661 (240 - 600), this is a bit high but the Dr said this can be caused by many things and not to worry about it but I thought I would still ask the endo about this.

So, do you think there is anything else I should ask? And if there is the possibility of trying T3 I don't know if I should try this or wait and see what happens on the 150mcg levo now that I have seen a slight improvement, I don't want to mess around with medication if I don't need to but then I also don't want to spend months feeling awful if T3 could help.

So, any advice much appreciated, thanks for reading x

14 Replies

  • What are you taking now? Your FT4 is very low, so probably your FT3 is low too, but we won't know unless it's tested. The TT3 gives no useful information, Total waste of time and money. You need to know how much T3 is available for the body to use. TT3 is a mix up of bound T3, rT3 and FT3.

    Given that your FT4 is so low - you need an increase in whatever you're taking - and they only did the TT3, it's impossible to tell if you're converting or not, so couldn't say if you need T3. But it never hurts to try asking for it!

    OH! just seen that you're on 150 Levo. Well, your FT4 is very low for someone taking 150. You probably have some sort of absorbtion problem. Could be your nutritional deficiencies. Your vit D is a bit low. And your ferritin could be a bit higher. Perhaps best to supplement with those, too.

    1000 mcg B12 is not enough to raise your very low B12. You need more like 5000 - or more. It is methylcobalamin you're taking, isn't it? Sublingual? Are you taking a B complex with it? The Bs all work together and need to be balanced.

    Your TPO antibodies say you have Hashi's - autoimmune hypo. So it's a good job your TSH is suppressed. I hope you're able to keep it that way.

    As to what to say to the endo, I really can't advise. Talking to endos is not my forte! lol

  • Thanks for the reply and advice Greygoose,

    I have a question about the B12, the recommended daily amount is 2.5mcg, so 5,000 mcg is 2,000 times that, why do you need to supplement with such a high dose? And can your body really absorb that amount of B12? I know you can't really take too much as it's excreted in urine but I'm just curious as to why such high doses are needed.

    I take a multivitamin that has the other B vitamins with 100% of the recommended daily amounts, and I know you shouldn't take those in high doses so I'm assuming that's okay, or do you think I should be taking more?

    Thanks again for the advice :)

  • When you have a B12 level as low as yours, just taking the RDA is just going to keep it at the same level, it's not going to raise the level. You take in 2.5 mcg, you use 2.5 mcg - that's why 2.5 mcg is the RDA. What you need to raise your levels is a massive boost.

    Think of a petrol tank : it's 1/4 full. You put in just enough to get from A to B. When you get to B, the tank is just 1/4 full again. So, if you suddenly had to drive 200 kms for some reason, you wouldn't have enough petrol because your reserves are low. (These are just rough examples, amounts not to be taken literally!)

    But if you fill the tank up to 100%, then you can drive from A to B and still have some petrol left for emergencies. :)

  • Thanks Greygoose :)

  • Sorry Greygoose one more question, what do you think my T4 level should be?

  • It should be at least in the top third of the range. But where exactly it should be for you is impossible to say. It should be high enough to produce enough T3 to make you well. But we're all different, so that level could be anywhere.

  • Thank you once again Greygoose :)

  • :)

  • Kittenmitten, my advice is not to get your hopes up too much. I didn't find my endocrinologist helpful and I sorted out my issues by self medicating. Bullet point a short list of the most pressing symptoms you wish to discuss and it may be helpful to make a separate list of medications, supplements and doses for the endo. I hope you'll find the consultation positive.

    I agree with GreyGoose that TT3 isn't a helpful measurement. TSH is suppressed and suspect your low FT4 means FT3 is low. If so, adding T3 to Levothyroxine will be beneficial.

    Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's) which has caused your hypothyroidism. There is no cure or treatment for Hashimoto's but suppressed TSH suppresses thyroid activity which can be helpful in reducing frequency of flare ups and antibodies. Many members find 100% gluten-free diet helpful too.

    Ferritin is optimal >100. Supplement iron with 500-1,000mg vitamin C. Take iron 4 hours away from Levothyroxine.

    B12 is low. Supplement 5,000mcg for 8-12 weeks to build levels and maintain after at 1,000mcg. Take a B Complex vitamin to keep the other B vits balanced. Folate is good.

    VitD is okay but you might want to maintain level until April with 1,000iu D3 which should als be taen 4 hours away from Levothyroxine.


    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.

  • Thanks for the advice Clutter,

    Regarding the vitamins, how much Iron do you think I should take? The mutivit I take has 14mg and I've read that more than 20mg can cause problems. And, does the Vitamin C help with the Iron?

    And with the Vitamin D, I had read that 25mcg was the upper limit, is it okay to take 1,000mcg?

    Thanks again :)

  • Kittenmittens, If you can tolerate it 210mg Ferrous Fumerate contains around 65mg iron. Iron can cause constipation so any amount is a problem for some people. VitC will aid absorption and minimise constipation.

    1,000iu (25mcg) is a maintenance dose to stop your vitD 79 dropping during the winter when ultraviolet light is too low to stimulate vitD. There's no upper limit to how much D3 to take, dosing is according to how low your level is. I was prescribed 40,000iu for 2 weeks and 2,000iu x 8 weeks and raised from <10 to 107.


    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.

  • Thanks Clutter,

    Sorry I read 1,000iu as1,000 mcg. Thanks for all the advice :)

  • If u want to try t3 then I'd suggest printing papers on it from thyroid UK etc websites. I did this when I wanted ndt and it helps to go prepared. I consult a private endo as the NHS one is anti ndt (and in fact anti treating me as my Tsh never got to 10 so I don't have hypo in her opinion despite my symptoms being cleared up by treatment). So I'd echo the recommendations as to not getting too optimistic about and endo visit; there appear to be many poorly informed ones and a few shining lights. Hopefully you'll get the latter but don't count on it

  • Thanks TuppenyRush,

    Sounds like you didn't have much luck with your endo, I'm glad you've found one who is helpful now. :)

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