Next steps after Endocrinologist appointment??

I have posted on here a couple of times to try and find out as much information as I can about a recent diagnosis of hypothyroidism. Since posting on here, I now know that I have Hashimoto's and have bought books and started researching as much as I can. From everyone who has given me advice, it seems a really good idea to go gluten free. I have had to push for a lot of tests with my GP and after my last test a couple of weeks ago when I was feeling particularly low, they came back as antibodies 416. I asked my GP what I should do next and he said come back for a re-test in 3 months. Both myself and my husband couldn't believe that I had to just wait another 3 months feeling so yuk, so I booked in to see an endocrinologist privately and saw him on Wednesday. I couldn't wait to see him and find the best way forward as I've ben reading so much and didn't want to go off like a headless chicken trying everything at once. Much to my disappointment, the Endo basically said he didn't think any of my symptoms are down to my thyroid issues but rather to do with the fact that "I'm a woman of a certain age and theres thousands like me who have grown up children and have more time on my hands"!!!! I knew at that point that I wasn't going to get any help from him. I asked what he thinks I should do next and he said he thinks that I will probably feel better in the Spring and that my GP has said that he would be happy to prescribe an anti-depressant!!!!! I managed to hold back the tears until I got home but am so disappointed that I they don't seem to be listening. However, I have now been to my GP and have a full list of the test results that I have had so far which are as follows:

June 2015

Serum free T3 level 4.8 (pmol/L6.50-3.50)

Serum free T4 level 12.6 (-11.00pmol/L23.00)

Serum TSH level 0.05> (L5.50 - 0.35)

Serum FSH level 4.6 (iu?L11.00-1.00)

A note under the results says - Suggest biochemically euthyroid with a suppressed TSH. Is hyperthyroidism suspected clinically? Suggest repeat TFTs in 1 month.

I was told by the GP that my test were abnormal and I needed testing in one month.

I went back one month later and my TSH level was 7.81(L5.50-0.35). I was told that this test fitted with all of my symptoms and they started me on a dose of 50mcg of Levothyroxine.

I have since gone back for regular tests and my TSH results have been 2.97, 1.37 and 2.63.

After taking the medication for 3 months and not feeling any better, after reading on this forum, I asked for my antibodies to be tested. The GP agreed to do the test and has done a lot of other tests including:

Serum folate - 5.7 (2.00-19.00)

Serum vitamin B12 - 288 (190-L900)

TPOab 416 (0.00-60.00)

MCH 31.2 (27-31)

And a whole range of other tests that all came back in normal range.

I was told by the GP that my antibodies were abnormal but to just go back in 3 months!! This was the point that I booked the Endo mentioned above!!

Anyway, sorry to go on and on.....but I just wanted to ask what the next step should be as I am going to try anything I can after Christmas.

Would the best thing be to go gluten free, dairy free and egg free for one month and then just introduce them gradually?

Also, from my test results, is there any other medication that I should be taking?

Are there any other tests that I should be having?

I am determined to get back to good health again!!! :)

Thank you

8 Replies

  • B12 is far too low. Suggest you get some sublingual b12 lozenges. As soon as possible and take one under the tongue every day. In some countries you are treated with levels under 500 .

    G x

  • Hi Galathea, many thanks for the info, I will go and buy some lozenges now. Do you have to wait a few hours between Taken Levo and these lozenges?

  • Taken sublingually, it won't have any effect on your Levo. It won't even come into contact, because it goes dircetly into the blood and by-passes the stomach.

    I have to say that just because a result comes back in the 'normal' range, it doesn't automatically mean it's good. Dépends on what it is. Often, it's where in the range it falls that counts, like the B12.

    Did you have your ferritin and vit D tested? Because they could be low in range, too. And you need them to be optimal for your body to be able to use the hormone you're giving it.

    You should also be taking a B complex with B 12, so that the Bs are balanced. There are other groups of vitamins and minerals that work together, but best to get the basics tested first. :)

  • Excellent thank you. I have just been an bought some B complex vitamins and also ordered some B12 lozenges.

    I have had a look at the list of tests that I have had and I can't see a test for ferritin or Vitamin D tests unless they are called something else.

  • Ummm... Vit D might be - but probably not - but Ferritin is Ferritin. Ask for them to be done, see what your doctor says. If not, get them done privately. :)

  • what time of day do you take your Levo?

    whenever you take it, you need to leave at least 1 hour before food/drink

    or 2 after hours food, drink or other medications or supplements

    Taking your Levo at bedtime might give better absorption

    I tried this at Endo's suggestion and this has certainly has helped my symptoms.

    also if you Hashi keeps flaring up and chucking out varying levels thyroid hormones (which can make you feel grim) some Endo's might suggest "block & replace" - block with propranolol (can't take propranolol if you get asthma though) and replace with Levo.

  • I take my Levo at 7.15am with a glass of water but I do then have a coffee about 15minutes later, so perhaps I need to change when I take the Levo until night time. Thank you for your suggestions.

  • You really should wait an hour for you coffee. So, maybe night-time dosing would be better. But at least two hours after eating. Leave even longer if it was a fatty meal. :)

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