Follow up to my post last week, now including some blood test results!

[Pigletts]

Hi,

I asked last week what people thought of being told about diagnosis of autoimmune hypothyroidism and upping levothyroxine over the phone with a GP secretary, and not speaking to a GP directly about queries I have, as well as now being told next blood test will be in a year's time ! Various helpful people suggested I get my results from the Drs and see what others thought. Please see below.

I have also made an appt to see a young GP who originally saw me about 2 years ago, and talked about me being subclinical hypothyroid and low in vitamin d, so then started the routine blood tests, which meant I was put on levothyroxine in December 2017, 25mcg, then after blood test in January, was put up to 50mcg, been on this dose since then. Following blood test on 22nd Feb, I have been told all ok, blood test in 1 year. I think he may be more up on recent stuff - hopefully! I was told, however, that I could not have a 20 minute appt as I had asked for, unless I had something specific to talk about. I said I had something very specific to talk about, my health, and that I was on a lifelong treatment and what I could do to improve health etc but that didn't cut the mustard with the GP secretary. Maybe I just make another 10 min appt after my first to finish the discussion?

I feel hard-done by with my results, as I have hardly any information compared to many of those sending in theirs! I only had vit d levels tested some time ago, the first time they were low, the next time they were ok. I have been using the Better you spray to help keep up levels, but I have no idea where I am with vit d now!

Thyroid function test (X77Wg)

21/11/17 2/1/18 22/2/18

Serum TSH 10.04mu/L 5.08mu/L 2.55mu/L

level (XaELV) (0.35-4.94) (0.35-4.94) (0.35-4.94)

above high ref above high ref

Serum free 11.5pmol/L 12.5pmol/L 14.1 pmol/L

T4 level (XaERr) (9.0-19.0) (9.0-19.0) (9.0-19.0)

Thyroid autoantibody level (XE257)

Serum thyroid peroxidase antibody concentration (XabCy)

154.00iu/mL (<5.61) 145.00iu/mL 108.00iu/mL

above high ref above high ref above high ref

I asked for a coeliac screen blood test in February - see below. Can I ask if it matters that this was not done until a whole 24 hours after the other tests, I can see this, from the date on the blood test results!

Endomysial Antobodies - Negative IgA

Endomysial antibody IgA level (Xalch) - Negative

Sorry about all of the above! I have been gluten free for 5 days (since the coeliac screen test), just to see if I notice any difference in anything, I was really cross to get a migraine 2 days ago, but it's early days!

I am a bit concerned about the 'above high reference limit' for the antibodies, what do others think? The GP secretary had said they are going in the right direction! I think a year to wait for another test is a bit much?

So, I was planning on asking for a blood test in 6 months, as a compromise, but also on asking about other tests to check levels of other things. Can I use any NICE guidelines or other published info to push for these other tests - vit d, folate, ferritin etc. I was also wondering why I don't have any info on free T3? I am aware now of the whole debate about T3 and many people needing this, not just levothyroxine.

My other half has just asked if I am still on the same message, so I will say thank you for getting this far with my blurb, and I would welcome any comments / thoughts, especially medical stuff I can read up on to help with my 10 minute GP appt!!

Thanks

[SeasideSusie Remembering]

With a current TSH of 2.55 (0.35-4.94) and FT4 of 14.1 pmol/L (9.0-19.0) you are nowhere near optimally medicated yet. You should still be having retests/increase in dose every 6-8 weeks until your symptoms abate, you feel well and your results are at a level that brings that about.

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo. I would go back to your GP and ask for an increase of 25mcg and retest in 6 weeks. In support of your request for an increase, use the following information and you can tell your GP that it came from NHS Choices recommended source of information about thyroid disorders (Thyroid UK - don't mention internet or forums)

thyroiduk.org/tuk/about_the... > Treatment Options

Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the article by emailing [e-mail] print it and highlight question 6 to show your doctor.

Dr Anthony Toft, is past president of the British Thyroid Association and leading endocrinologist. He also wrote the booklet "Understanding Thyroid Disorders", which states many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above. It's published by the British Medical Association for patients. Available on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor. However, I don't know if this is in the current edition as it has been reprinted a few times.

[Pigletts in reply to SeasideSusie]

Hi,

Thanks very much, I had seen the booklet mentioned before, and will also ask for the article, now I am a bona fide member of Thyroiduk!

I did think things weren't quite sorted, although in fairness, I don't feel poorly as many are, I am still a bit baffled I was diagnosed, as I didn't think I was doing too badly for my age, but when you add things up, maybe I was just doing just about ok health-wise. I do need to thank the young GP who originally asked for blood tests a while ago, just from me talking about headaches. I thought I would be told to go away!

Do you think it matters I have no T3 results?

Thanks

[SeasideSusie Remembering in reply to Pigletts]

I think it matters very much that FT3 is not tested for everyone, most importantly when results show a low/suppressed TSH and high FT4 which doctors don't like. T3 is the active hormone, the hormone that every cell in our bodies need. It's the most important test. If FT3 is low we will have symptoms, it doesn't matter if FT4 is high, if T4 isn't being converted to T3 well enough then we remain symptomatic, we need to know our FT3 level. I think it should be standard and I can't understand why doctors don't know these quite simple facts about hypothyroidism.

[Pigletts in reply to SeasideSusie]

Thank you. It's all really confusing!

I will have a read of what you have suggested, and get less confused hopefully ready to see the GP!