Advice Needed please - Test Results: Last week I... - Thyroid UK

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Advice Needed please - Test Results

LexxiiB profile image
5 Replies

Last week I posted the following message (in italics), and took on board the advice to go and get my test results. On enquiring with my doctor, it became clear that not only do they give the impression that they are not overly concerned by my symptoms etc. but they haven't been doing the T4 test - only the TSH test.

Therefore I have had my test done at medichecks.

Here is last weeks post as my back ground:

"Hi everyone, I’m just signing up hoping that I can share some of my frustrations with you??

I was diagnosed with under active thyroid in Feb 2014, after the birth of my boy. However I wasn’t diagnosed for 8mths, so by the time I got to that stage my face was starting to swell and a coma was not far around the corner. To cut a very long story short, and after a continuous fight with my doctor I was on 125mcg for about a year and eventually managed to loose 3.5stone which I had retained after being pregnant. For a time I felt ok - hard to tell with a young baby but things did improve.

However as of September 2017, I started to feel like my “levels” may not be quite so settled, so I went for a blood test. Surprisingly, my T4 levels had spiked so the doctor reduced me to 100/125mcg alternating days. On return to the doctors 8 weeks later, my T4 levels had gone even higher, so at the end of December they reduced me to 100mcg and I am yet to have a test to see what has happened to the levels.

Since I felt the difference in my levels in September, I have also gained a lot of weight very quickly, peaking at around quarter of a pound a day before Christmas. Since January 1st I have returned to the diet that I originally lost 3.5stone on (so it’s tried and tested by me already!) and in the last 5weeks I have only managed to loose minimal weight, and in the last 2 weeks I have remained the same on the scales. I don’t understand why??? I can’t try any harder - I am trying harder than the first time I lost the weight!!!

I’m sick of this issue and really just want myself back...not wanting to sound dramatic but I feel so alone - hence I thought I would write!! Since having this I have lost my self esteem, I have acne, mood swings, tiredness that I can only describe as hurting my bones, and no immune system (tonsillitis, chest infections, 3 colds and pneumonia in the last four / five months - although doctors say that my lack of immune system has nothing to do with my thyroid - I remain unconvinced on that!)

I’m not the kind of person that gives up or gets beaten by something, but this is getting the better of me and I think that I’m getting sick of feeling sick in one way or another....

I just don’t know how to tackle this - my doctors just seem to think that they should get you to a certain level and there we go that will do....but it won’t do??? I feel like I’m going mad 😡

Sorry for the rant..... any advice really welcome!! 🙏🏻 "

I am 6/7 weeks into reducing my dose down to 100mcg from 125mcg under my doctors supervision. My current concerns are stagnant weight loss, acne, dull skin, exhaustion, low mood/slight anxiety and a very poor immune system.

My results were as follows (three in bold were picked out by the team):

THYROID STIMULATING HORMONE 0.358 mIU/L 0.27 - 4.20

FREE THYROXINE 18.8 pmol/L 12.00 - 22.00

TOTAL THYROXINE(T4) 100.0 nmol/L 59.00 - 154.00

FREE T3 4 pmol/L 3.10 - 6.80

THYROGLOBULIN ANTIBODY *547.000 IU/mL 0.00 - 115.00

THYROID PEROXIDASE ANTIBODIES*334 IU/mL 0.00 - 34.00

ACTIVE B12 75.400 pmol/L 25.10 - 165.00

FOLATE (SERUM) 7.74 ug/L 2.91 - 50.00

25 OH

VITAMIN D *30.8 nmol/L 50.00 - 200.00

What's the best course of action for the above?

Does the above explain my symptoms?

Would a diet change help?

I will do anything that's needed, I cannot go on living my life like this!

Thankyou so much to all you lovely people who are willing to take time to help people like me. :)

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LexxiiB profile image
LexxiiB
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5 Replies
humanbean profile image
humanbean

Your antibody results show you are positive for autoimmune hypothyroidism (aka Hashimoto's Thyroiditis). When your levels of Free T4, Free T3 and TSH fluctuate wildly it is almost certainly your thyroid antibodies causing the problem.

Doctors assume these fluctuations are the fault of the patient e.g. because the patient is not compliant, or because the patient takes too much to make up for forgetting a few pills, or just takes too much all the time. Their response is often to dramatically cut the patient's dose so that they become severely hypothyroid, and then the slow progress back to a decent dose starts again. It's hell for the patients caught by this problem.

There is lots of info on how to live with and reduce the effect of Hashi's on this site :

thyroidpharmacist.com/

Take a look around the site - the author has Hashi's herself. She also has a facebook page, and has written a couple of books with good reviews on Amazon. You'll also find her appearing in several videos on Youtube.

LexxiiB profile image
LexxiiB in reply tohumanbean

Thankyou for your reply, I have had a quick look and will try to read up some more. Gosh its all so complex I just don't know where to start! :)

humanbean profile image
humanbean in reply toLexxiiB

Start by looking into gluten and its effects on hypothyroid people. Many of us on here turn out to be non-coeliac gluten sensitive (coeliacs shouldn't be eating gluten anyway :) ). Removing gluten (ruthlessly!) from the diet helps lots of us. Even people without autoimmune hypothyroidism may benefit from giving up gluten. I definitely did.

LexxiBB profile image
LexxiBB in reply tohumanbean

Thankyou for your advice :)

shaws profile image
shawsAdministrator

I am not sure if you know the best way to get the optimum results. Just in case you don't this is the procedure to followg:-

All blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose and the test and take it afterwards. Always take levo with one full glass of water and wait an hour before eating. Food interferes with the uptake of thyroid hormones.

Some people prefer taking dose when they get up and others prefer a bedtime dose. If taking a bedtime dose and having a test next a.m. miss this dose and take after test and at bedtime on the same day.

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