Hashimotos (I think)

[jackyann53]

When I was first diagnosed as hypo I had a scan on my thyroid and my gp said it showed I had 'thyroid disease'. I didn't know to question what that meant so now I'm wondering if she meant Hashimotos or not. I guess I really need to speak to her but in these viral times feel I'd just be pestering. I started on 50mcg levothyroxine but after a few months was feeling pretty awful, had another test and was put up to 150mcg. I was feeling unwell recently, had a test and my dose was reduced to 125mcg despite telling my gp I had weight gain, exhaustion, hair loss, depression etc. and that my thyroid had been aching for a year or more. My throat feels somewhat uncomfortable all the time these days. I've ordered a private test but will my gp be interested I wonder. Any advice on next steps would be wonderful.

[fuchsia-pink]

Welcome to the forum.

You probably need "proper"blood testing - by that I mean TSH, free T4, free T3, thyroid antibodies, ferritin, folate, vit D and B12. You have probably only had TSH and possibly free T4 tested ...

The antibody test will help to show if you have Hashi's or not. The nutrients will let you know what supplements (if any) you need to get the most from your levo. The free T4 and free T3 - the thyroid hormones - will tell you whether you are on the right level of medication.

Far too often, we just get TSH tested but this doesn't tell you how much thyroid hormone you have, or how well the inactive free T4 converts into the active free T3. And we are also fobbed off with platitudes like "in range" or "normal" - when what you actually need are the actual results [and lab ranges, which vary from lab to lab] and results which are optimal

See if you can get your historic blood test results, and post them here ... and if your GP won't do the full testing you need, you will see lots of posts here about private testing. Good luck x

[jackyann53 in reply to fuchsia-pink]

Thanks so much for your reply, I have ordered a full thyroid test including antibodies I just haven't had time to get myself into the correct frame of mind to do it on a day I can get it to a good collection post box (live in a small village). Your reply is very helpful x

[SlowDragon Administrator]

How long have you been on 125mcg

Really need to retest 6-8 weeks after changing dose (or brand)

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Tips on how to do

DIY finger prick test

healthunlocked.com/thyroidu...

[jackyann53 in reply to SlowDragon]

Hi, organising myself to do a finger prick test on myself to send off, just need to get my head round the instructions and do it on a day I can get to a post box with good collection. I don't bleed very freely so I'm a bit concerned. I've been on 125mcg since Feb then of course covid happened. I've had a gp test around 2 months ago which recommended another test soon but nobody has contacted me so I thought I'd get the private test and take those results to the gp as it will have T3 too. Thanks so much for your helpful answer.

[SlowDragon Administrator in reply to jackyann53]

Make sure to test Monday, Tuesday or Wednesday morning and post back via 24 hour tracked postal service

[jackyann53 in reply to SlowDragon]

Thanks yes did it today and sent back in prepaid 24 hr tracked envelope.

[JAmanda in reply to jackyann53]

I also didn’t bleed freely and my bloods were all a coagulated mess so useless. But the testing company just suggested I pay the money for the hospital blood draw and sent me a new kit. I always now pay the £30 and book into the blood clinic to get it done.

[jackyann53 in reply to JAmanda]

Is that to your own gp practice? I managed it myself with difficulty.

[jackyann53]

Thanks for your reply - I managed to do the finger prick but the scene was more like Miss Scarlet in the bedroom with a razor sharp machete than Jacky in the bedroom with a sprung needle lol. I soaked my hand in warm water first then it took 2 tries and about 20 minutes of squeezing, also not very easy to get it in the tiny tube!

[foxyeyes]

I'm afraid I can't give you any idea as my bloods came back okay but I have never done well on thyroxine but doc won't listen so feeling rotten most of the time hope you get sorted

[jackyann53]

Bless you, the gps don’t have a handle on this thyroid thing, something needs to change. Try a private test like I’m doing, that’s what most people seem to be doing. Hope you get sorted out too x