Newbie here - TSH readings up and down - feeling worse than ever

[bristolboy]

Hello everyone, I'm a newbie and I've been loitering in the background for the past couple of weeks, but the time has now come to seek your advice.

I've put a lot on my Profile, so it might be worth reading that in conjunction with this post. I apologise in advance for the length of this post

Basically, my hypo symptoms have been getting worse since late-2015 (I've been on levothyroxine since 2008/9). My levo dose has been increased twice since late-2015, but TSH readings since then have been up and down, all over the place:

May 2016 2.9 (don't know range for sure - see below)

June 2016 - endo increased dose to 175 per day with a view to getting TSH down to 1.00

June 2016 1.9

August 2016 1.4

February 2017 2.25 - feeling worse - endo increased dose to 175/200 alternate days

April 2017 0.33

May 2017 0.62 - and feeling worse than ever

August 2017 0.09 - GP reduced dose to 175 per day

October 2017 0.36

December 2017 0.16 (Range = 0.27 to 4.2) - GP reduced dose to 150, with re-test in 8 weeks.

Other results received today (never done before, as far as I know):

Vitamin B12 767 (range 180 - 900)

Ferratin 296 (range 33 - 490)

Folate 11.10 (range 2.5 - 19.5)

Full blood count "Normal"

It's worth pointing out 2 things. Firstly, I have only just today found out the lab's range for the TSH readings - so I don't know if the same range applies to previous readings. Sorry, that's pretty useless to you, isn't it!!

Secondly, I only found out in October that I should leave a gap of at least half an hour between taking the levo and having breakfast - which could explain why the reading has dropped again since October, if the levo is being absorbed better.

So now I'm down to 150 per day, with a re-test in 8 weeks. After that re-test, whatever the results (because I imagine I'll still be feeling awful) I intend to ask my GP for tests of FT3 and FT4. If she refuses, I will pay for a private test.

If my FT3 turns out to be lacking, I will ask my GP for a referral to an endo who definitely prescribes T3. If the GP won't do that, I will tell her that I will buy T3 on the internet and will self-medicate. I will tell her that I will keep her updated at every stage - and if I suffer as a result of the self-medication, then the blame will lie partly at her door.

Sorry for wittering on for so long, and I know you've heard all this a thousand times before, but trying (and failing) to get back to anything close to "normal" has driven me to my wits end. It's no wonder GPs try to prescribe us with anti-depressants - trying to get any sense or help out of the NHS is enough to make Mr or Mrs Happy depressed!!

Any suggestions would be gratefully received. Nick.

[Clutter]

Welcome to the forum, Bristolboy.

It's a pity your GP practice doesn't test FT4 in addition to TSH. TSH 0.16 is slightly below range but isn't suppressed but that doesn't mean FT4 is adequate. Primary care rarely tests FT3 so you will probably have to order your own thyroid test to check it. thyroiduk.org.uk/tuk/testin... Medichecks offer #ThyroidThursday discounts & have extended yesterday's discount to the 17th.

B12, folate and ferritin are good.

[shaws Administrator]

Thanks for your Profile as it gives a lot of information with no need to ask many questions.

One hour is the preferable space between levothyroxine and food. Food interferes with the uptake of thyroid hormones.

We should have at least one Full Thyroid Hormone Blood Test, I feel but they appear to have been told that TSH and T4 is sufficient but it isn't.

A Full Blood Test should consist of TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

All tests have to be at the very earliest and fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards. This helps keep the TSH at its highest and may prevent an unnecessary adjustment.

If GP or lab wont do all, you can get private test to cover those that weren't taken.

You definitely need a Free T3 blood test especially as GP is offering anti-d's instead. Excerpt he will probably be unaware that T3 is required in our millions of T3 receptor cells and brain and heart have the most.

Levothyroxine is T4 only. It is inactive and has to convert to T3. T3 being the only Active thyroid hormone.

We have to read, learn and ask questions as the medical profession appear to know little at all about what is the purpose of the Thyroid Gland.

[greygoose]

The reason your TSH readings are so up and down is because your GP is dosing by the TSH, which is the worst thing she can do! Once you are on thyroid hormone replacement, the TSH is irrelevant. Doesn't matter how low it goes, as long as it doesn't go up. So, all those times she reduced the dose, she was probably wrong to do so.

The most important number is the FT3, but the NHS never tests that, because it's too expensive. Subsequently, doctors do not understand T3. Failing the FT3 test, the next best thing is the FT4, and that can still be low, even when your TSH is below range, so very important to look at that. But, even so, it doesn't tell you if you are converting the T4 to T3. So, dosing is really very hit and miss.

Even if you get to see an endo, there's no guarantee that he will know any more about thyroid than your GP. So, your best bet probably is to learn about your disease, and start self-treating! Sad state of affairs.

[bristolboy]

Many thanks to Clutter, shaws and greygoose for their advice, I'll get a private test for T4, T3, FT4, FT3 and thyroid antibodies and will re-post when I have results. Merry Christmas, Nick .