Next step 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

7 Replies

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  • Hello Jillycee,

    I can understand your frustration and annoyance regarding your insulting treatment at the hands of an incompetent endo.

    Let Louise know privately so as she can add him to her list of No Nos

    I would put your post on PAS forum as your B12 level is low, although it is in range. I am a member of both forums as thyroid and B12 def can have a link.

    PAS recommend a B12 level of 1000 to feel well.

    Take things easy over Christmas if you can my dear.

    X

  • Hi Jose651, many thanks for your reply. I will forward the endos details to Lousie and thanks for the B12 info, I will post on forum now :)

  • Jillycee, I think your endo knows very little about thyroid apart from being a patronising git. Most people feel better with TSH 1.0 or lower, with FT4 in the upper quadrant of range, and FT3 towards or in the top third. Ask your GP to increase dose to 75mcg. Read Treatment Options in thyroiduk.org.uk/tuk/about_... If you want a copy of the Pulse article to show your GP email louise.warvill@thyroiduk.org.uk when the TUK office reopens Jan 5th.

    100% Gluten-free diet can help reduce Hashimoto's flares and antibodies but you'll need to try it for 6-12 months before you're likely to notice any benefit.

    chriskresser.com/the-gluten...

    thyroiduk.org.uk/tuk/about_...

    If you intend eliminating foods to see whether they are triggering symptoms you should eliminate one group at a time ie dairy for 2-3 weeks, noting any improvement and any adverse reactions after you reintroduce dairy, then move on to the next group, eggs etc.

    B12 288 is low, PA Soc say 1,000 is optimal. I'd supplement 5,000mcg methylcobalamin daily for 6-8 weeks then maintain at 1,000mcg daily. Take a B Complex vitamin to improve folate and keep the other B vits balanced.

    See whether you can persuade your GP to test ferritin and vitamin D as they're commonly low/deficient in Hashi/hypothyroid patients.

    _______________________________________________________________________________

    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.

  • Clutter, I note your exclusion at the end of your responses:-

    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.

    but I and the members of this forum are aware that you know and understand their problems far better than all of the Endos/doctors tied together. :)

  • Shaws, Thanks. I understand from experience how being told your symptoms are not due to thyroid or Levothyroxine is unhelpful and how low it can make you feel. Unfortunately, the best I can do is to support people who are being made to think their symptoms are all in their head, when they're undermedicated or undiagnosed and we know symptoms can present long before abnormal bloods.

  • Clutter, thank you for your response. The Endo certainly was patronising, he ended the consultation with "at least you get free prescriptions"!!!

    I have today purchased the Vitamin B Complex as suggested and have struggled to find the 5,000mcg methylcobalamin in the shops, so have ordered it online. I will start taking both of them next week. I have purchased a Hashimoto's cookbook which seems to have a lot of great recipes and information in and I will start my new diet in the New Year. I will ask my GP to test for Ferritin and Vitamin D. Thank you so much for all of the info.

  • Jillycee, What an unempathetic fool the man is! We'd prefer to feel well without prescriptions, free or paid for. When you're optimally dosed hopefully the only prescription you'll need is the 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.

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