Please can I have some advice?

[Sishey1]

I got my recent blood results back from medichecks. I'm self medicating after seeing private Gp's/functional health doctors who diagnosed underactive thyroid with possible conversion issues. I'm saving up for another appointment but in the meantime I've been trying to sort out meds myself and not doing the best job to be honest. I was taking 2 metavive IV a day and 25ug of T3 but I felt like I was getting a lot of palpitations (particularly when walking upstairs). So I reduced my dose to 1 metavive and 12.5 T3 then just one metavive when the palps were still happening.

Had some bloods done at the gps and iron was low - and that seemed to be the cause of the palpitations so have increased dose of meds up again to 1 metavive and 12.5ug T3. Have been doing this for almost 3 weeks.

Medichecks results were as follows (from 5 days ago)

TSH 0.856 (0.27 - 4.2)

Free T3 3.51 (3.1 -6.8)

Free Thyroxine 11.8 (12 - 22)

I have been struggling for years with chronic fatigue - until I started thyroid meds. I don't feel like the dosage is right yet as can hardly move from the sofa each evening from being bone weary. I'm not particularly old and not overweight but I don't feel right.

MEdichecks Dr saying all is ok apart from T3 and that reading is low because I'm on T3 meds...

I saw an NHS Endo a couple of months ago as TSH was under range (i had stopped T3 at this point) My results were 0.07 ( 0.27- 4.2) . and t4 was right on the lowest range 12.0 (12.0 -22.0). No T3 was tested as NHS.

. I explained to the Endo that TSH didn't accurately report the condition of the thyroid but of course this wasn't accepted.

I really don't have a great clue as to whether I'm making things better or worse.

During the day I'm generally ok, some mornings are more difficult than others but by evening I'm totally shattered.

Any advice would be so appreciated. I feel I'm completely off track with all this.

Many thanks in advance..

PS i tried to post this earlier but hadn't inserted a title - please accept my apologies if this is the 2nd post from me today - I tried to see if it had already been posted.

[Lalatoot]

You need to stop chopping and changing doses so that you can assess the situation. It takes 6 - 8 weeks for dose changes to settle so do not waste money on bloods before then as readings will not give a true picture.

The last dose of t4 should be 24 hours before the test and the last dose t3 8 to 12 hours before test. This gives best picture of actual blood levels rather than the spikes.

Your tsh and ft4 results will be lower as you are on t3. Your t3 result will not be lower because you are on t3.

What you need to do is stay on a steady dose for 6 weeks and then get tsh, ft4 and Ft3 tested. Post the results on here and you will get guidance.

For the hormones to work you need vitamins to be in top third of their ranges so you need to check the levels of vit d, ferritin, folate and B12 and supplement if low.

There's lots of help on here.

[Sishey1 in reply to Lalatoot]

Thanks for your feedback lalatoot. Yes this site is an absolute God-send.

All vitamins are fine apart from ferritin which I’m now supplementing. B12 has been over range for a while now .

I have another endo apt this week and I’m feeling nervous as I don’t feel like I’ll be heard .

[Lalatoot in reply to Sishey1]

It is not that they don't hear always; it is that they don't understand or know particularly if you don't fit the lego-cures-all profile.

[Sishey1 in reply to Lalatoot]

Thanks Lalatoot

[Miffie in reply to Sishey1]

From what I hear endos as a breed are not wild about patients who don’t follow the guidelines set by the endo. As you are self sourcing and medicating I think you might as well cancel the appointment you feel nervous about. Save yourself the anguish.

[Lora7again]

I can understand that you want to feel well as soon as possible but with thyroid disease it is a long process and you need to give any medication you take time to work. I am only now starting to feel better after 6 months from my thyroid storm and before then I was virtually bedridden for over 2 years. You are probably wondering why it took so long, well after being told by my GP that there was nothing he could do for me because my TSH was in range I sort of gave up. Eventually I joined another UK site and a lady on there told me where to purchase Thyroid S because my T4 and T3 were too low. I then took it for about 6 months and when I had flare up I stopped it. I suddenly lost 50% of my hair in a week so I stopped it cold turkey because I was frightened I would go bald. I think I had either taken too much or my goitre had dumped a load of thyroxine into my blood. Last year I forced myself to go on a sunny holiday with my family in June and that seemed to make me start to feel better. My hair stopped falling out and I started to drive my car again. I could actually taste food and smell it and I became more active. At the moment I feel well but I know it won't last forever unfortunately. I wish I knew what I could do to treat my autoimmune thyroid disease but I don't, it is all trial and error. I have found a lot of good advice from sites in the US and sites here in the UK. I can quite honestly say my GP and the NHS have never helped me.

[Sishey1 in reply to Lora7again]

Yes it’s a long term process with very little support like you.. I’ve been on meds for well over a year and although had some success I’m not ‘getting it’ and need some help with it all. I live on my own so often exhausted just from doing the life stuff. Thanks for responding to me Lora7again.

[greygoose]

Palps can be a symptom of under-medication, so reducing the dose is not always helpful.

[Sishey1 in reply to greygoose]

Thanks Greygoose useful to know

[greygoose in reply to Sishey1]

You're welcome.

[fuchsia-pink]

Can you take someone - a man for preference - with you to the endo appointment? They tend to take us more seriously then! And point out that the T3 and T4 levels here are straggling along the bottom of the range (just under for the T4)

[Sishey1]

I’m afraid not .. sad it would probably work that way isn’t it . Thanks anyway fuscia-pink