Confused!

[Red63]

Hi, I have a history of thyroid antibodies an episode of, unexplained, hyperthyroidism and familial Hashimoto’s. Alongside this I have a diagnosis of Fibromyalgia (though I think it’s more likely thyroid related) and an elevated Red Blood Cell count. I have recently been told I have a Vit D deficiency, it’s 7.6 😳, and have been placed on a mega oral dose daily for 3 months then a recommendation that I supplement fro life. It’s all getting a bit confusing as my GP is only treating me for the Vit D issues but I’m sure there is something else going on with the thyroid etc. Anyone have any experience of this combination of symptoms? Any information gladly received 😊

[SeasideSusie Remembering]

Red63

Low nutrient levels are common with us Hypos, I had severe Vit D Deficiency with a level of 15 for which I self treated and am now maintaining at a level of around 150 (the Vit D Council recommends a level of 100-150nmol/L). You could possibly have other low nutrients too, you need B12, folate and ferritin tested.

Fibromyalgia is a bit of a cop out diagnosis as I think it's often connected with undiagnosed hypothyroidism.

If you have high antibodies and there's Hashi's in the family, then you're very likely Hashi's too and that is why you had an episode of Hyperthyroidism. Have you got any recent thyroid test results you can post, with their reference ranges - TSH, FT4, FT3, Thyroid Antibodies?

[shaws Administrator]

Welcome to our forum and members will respond.

The first thing I will state is that if you have been diagnosed with thyroid antibodies - no messing about and you should have been given levothyroxine at a starting dose of 50mcg of levothyroxine.

Unexplained 'hypERthyroidism' is most probably due to a rush of thyroid antibodies entering your blood stream so you feel 'hyper' but still hypothyroid if antibodies are present. It's proper name is Autoimmune Thyroid Disease. The antibodies attack your gland until hypothyroid but treatment should begin if antibodies are present.

You are correct about 'Fibromyalgia' which I believe is also connected to a dysfunctional thyroid gland and no doubt your Free T3 will be low, causing symptoms. One specialist and expert on Fibro only treated his patients with liothyronine, also known as T3.

You need a Full Thyroid Function Test which should be at the very earliest possible, fasting. If you were diagnosed and taking thyroid hormones, you'd allow a gap of 24 hours between last dose of levo and test and take afterwards. This helps give us the best outcome as doctors only appear to look at the TSH and, in your case, if it hasn't reached 10, you remain undiagnosed - which is really ridiculous. In other countries when the TSH reaches 3+ then we are diagnosed and prescribed hormones.

Ask for TSH, T4, T3, Free T3, Free T4 and thyroid antibodies. Those doctor or lab wont do (if TSH is in range) you can get privately and we have two labs who do pin-prick home tests.

At the same time GP should request B12, Vit D, iron, ferritin and folate.

Get a print-out for all of your blood tests from now on for your own records and put them on a new post for comments.

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

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

If someone has thyroid antibodies regardless of their TSH they should be prescribed levothyroxine, 50mcg to start with blood tests every six weeks with an increase.

[Red63 in reply to shaws]

Thanks for the response. I’ve had thyroid antibodies for nearly 30 years and have never been offered treatment or been told it indicated anything but the probability that my gland would ‘fail’ in future. The episode of hyperthyroidism resolved after a few weeks and I was told it ‘could have been’ a viral response (by a endocrinology professor!). As I am in the U.K. I paid earlier this year for a full screen that said everything was ok with my thyroid function. It’s only since the Vit D deficiency diagnosis, a few weeks ago, that I’ve been wonderin* if it could be linked. I’m not sure where to go next. My GP isn’t concerned about the thyroid and hasn’t even suggested there may be a link between the two. I’ve basically been to,d to wait for my thyroid gland to fail...but now I’m having issues with my Vit D I’m thinking I may need some kind of screening.

[shaws Administrator in reply to Red63]

Email [e-mail] and ask for a copy of the Pulse Online article by Dr Toft.

Highlight the part where it says if antibodies are present you should be prescribed. Dr Toft was President of the BTA for many years.

[Red63]

Latest bloods:

free thyroxine @ 17.1 pmol/L (range 9.5 - 21.5)

TSH @ 1.22 mU/L (range 0.3 - 4.7)

Serum B12 @ 416 pmol/L (range 145 - 569)

Serum folate @ 8.9 ug/L (range 3.9 - 26.8)

[shaws Administrator in reply to Red63]

Copy and paste your blood test results onto a new question for more comments. TSH and FT4 isn't sufficient. We need Free T3 and thyroid antibodies. FT3 is the most important as it indicates if we can convert levothyroxine into T3. Even though your FT4 looks good. It is T3 that is the Active hormone and required in all of our T3 receptor cells. T3 drives our metabolism as it is the only Active thyroid hormone. Levo is inactive.

I think doctors have been told that only TSH and T4 is sufficient.

[Red63]

Ok I will do this tomorrow when I can access the last full thyroid assessment I paid for...my GP only ever does the basics. Thanks 😊

[Red63]

Updated data: 18th April 2017

FT4 @ 15.21 (normal range), T4 @ 97.5 (normal range), TSH @ 2.02 (normal range), FT3 @ 3.86 (normal range), TGAB @ 522.800 (very high), TPOAB @ 78.09 (very high)

My recent tests by my GP didn’t include my antibody levels.

Thyroid hormones were in normal range though. As I also have an elevated RBC (red blood count), a low Vit D level and low Alkeline Phosphatase I’m a bit non plused as to what’s going on and I haven’t the knowledge to work it out (or the energy to make much sense of it all).

Anyone?