Blood test time - still no better

[Loopnova]

Hello

I'm posting again to get views on my latest blood tests, although I think it's probably same as last time. I just don't get anywhere with my doctor.

Last time some of you were saying that I possibly had poor conversion and I think my results this time are showing similar sort of numbers. My doctor said it's all fine though, she thinks my thyroid is all under control and refused to refer me to a endocrinologist because there was no need. She has been good in other ways, doing all sorts of tests to try and find out what's wrong with me (she thought it was more rheumatological) but everything else is coming back as fine.

So, levo dose was reduced to 75 in June.

September TSH was 0.4 (0.2-2.0)

I've done a private test now:

TSH 0.939 (0.27-4.2)

Free T3 3.6 ( 3.1-6.8)

Free T4 20.1 (12-22)

Ferritin 200 (30-207)

Folate Serum 20.7 >7

Vit B12 145 (37.5 - 188)

Vit D 141 (50-250)

All usual rules followed for blood tests. I've tried gluten free and dairy free (doesn't seem to be having any effect).

I take vit b, vit d, selenium and magnesium.

Doc is at a loss what's wrong with me so I'm on a trial of HRT in case it's perimenopause (I'm 42). Six weeks in and no change yet. When I go back to doc next month, if I'm no better, she'll be wanting me to try anti-depressants.

It might well be something other than thyroid, but it's an obvious thing to check and make sure I'm at optimal levels.

Thanks in advance!

[Forestgarden]

Doc is at a loss what's wrong

It's obvious whats wrong. You are hypo. Your free t3 is too low. You're not converting t4 to t3 too well. What you need is liothyronine. Please see a different GP and get a second or third opinion. Find a GP who actually understands the thyroid

[Loopnova in reply to Forestgarden]

I'm tempted just to go private, I got the list from Thyroid UK website. Doc won't even entertain anything until the three month HRT trial is up

[Forestgarden in reply to Loopnova]

Do YOU feel you need hrt?

[Loopnova in reply to Forestgarden]

Well it's not made any difference so far. I was willing to try as an option as I have other friends my age on it that says it helped a lot. Doc said it usually has an effect after four weeks but seeing it hasn't, I'm going off the idea of it.

[arTistapple in reply to Loopnova]

In a way you have been fortunate your GP has not referred you. I was referred and then refused by the very eminent endo in my region. He wrote back to my GP “Titrate up her dose. Hope that helps”. I have a heart condition which everyone was ignoring (likely due to hypothyroidism). They really were probably too lazy to read the notes and (I now think) did not want the hassle. If I thought I had been unwell before asking for the referral, worse was to come. I was so ill on the 25mcg increase and duly baptised into the terrible treatment of hypos in the UK.

Private is not a panacea. Do your ‘due diligence’ before spending your money. Ask their secretaries specific questions before considering making an appointment. If you don’t get an answer beware, because they should know quite a bit about how they work. Ask specifically for private messages on the Forum about the ones you think you might use, for personal feedback.

Don’t expect the endo to even be on your side. Some of them get shocking feedback.

[Forestgarden]

frontiersin.org/articles/10...

Print this paper out and highlight the long term risks for your gp: a decreased conversion of T4 to T3 (lower FT3, lower FT3/FT4 ratio and/or higher FT4) was associated with a higher prevalence of diabetes, a more adverse lipid profile, a lower eGFR and an increased 10-year risk of cardiovascular events.

And this is in addition to your current, 'everyday' hypo symptoms. It beggars belief they're happy to put you on anti depressants, but won't consider slightly adjusting your thyroid meds

[Loopnova]

Thanks, I'm looking at the link now.

Yeah for about three appointments in a row she offered me anti-depressants. I got so fed up I finally said yeah, if you think they'll help, and then she changed her mind telling me I don't sound like I'm depressed! It was her that suggested them repeatedly!

[Forestgarden]

My results (hypo since RAI in 2019), are similar... ft4 at top of range, ft3 below 20% of range. Its taken me 2+ years of battling the gp, and getting passed from one gp to another (one had no thyroid knowledge, one talked to me with disdain and complete exasperation, one was ok, but ultimately his hands were tied), to simply accept I'd have to go private. I'm seeing a private endo next month. How much are you prepared to do battle?!

[Loopnova in reply to Forestgarden]

I’m tired, I don’t have the energy to battle! If paying gets me to good health, it’s worth it. (Within reason though). A couple of hundred for a consultation is ok, hopefully they’d take the blood tests I’ve just paid for, but it’s how many more appointments and how much for medication if I get it (when I should be entitled to it free on NHS).

[Forestgarden in reply to Loopnova]

Once you've got a private appointment, get your own bloods done, keep a diary of symptoms, temperature, pulse rate. Make sure all your vitamins etc are optimal. Then, when you see the private endo, you'll have all bases covered, and you'll hopefully be able to move forward

[Loopnova in reply to Forestgarden]

Thanks, I've already got a spreadsheet going with all my results😆. good luck with your appointment.

[SlowDragon Administrator]

Roughly where in U.K. are you

you will need to go privately initially to get T3 prescribed

Even if GP would refer you….vast majority of local endocrinologists are diabetes specialists

It’s typically over a years wait for referral and if your TSH and Ft4 are “normal “ often refused at last minute

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations that way you can hopefully transfer

thyroiduk.org/contact-us/ge...

Meanwhile worth getting Dio2 gene test

regeneruslabs.com/products/...

cdn.shopify.com/s/files/1/0...

[Loopnova in reply to SlowDragon]

Thanks. I’m in Yorkshire. I had the list before but the link is now broken so I’ll ask for it again.

[CrochetDimples]

There are new guidelines on B12. Thyroid problems are often also associated with B12 deficiency and I think your levels are low, despite you stating you're taking a supplement. Maybe you aren't taking enough or aren't able to absorb it properly orally.I've been on thyroid meds for about 7 years and it has been fine but last year, the fatigue ramped right up again. I am now taking 2000 micrograms of B12 and after about 4 weeks I'm much better.

Here's the BMJ article.bmj.com/content/383/bmj-202...

Make sure you check the units used for your tests.

Good luck.

[Lovecake]

Also be aware that taking HRT can lower your thyroid levels. So you might get even lower levels in the next couple of months.

Follow all the advice in your post and you should start to get some proper answers. I went private for T3, best thing I’ve done. Couldn’t function without the added T3 now.

[SilverSavvy in reply to Lovecake]

Completely agree with Lovecake. I spent two years titrating up slowly on T4 only to discover I don't convert very well. Continued to feel lousy. Took all of the above advice about endos and finally got some T3. I don't take a big dose at all but it's been the best form of treatment I've had in what is now 2.5 years. Feel like I'm (mostly) getting my life back. Don't want to jinx it by saying that too soon - but I'm so glad I pushed for T3. It's so hard to do the pushing (and working the out of date UK Thyroid treatment systems) when you are feeling exhausted and vulnerable...but it's worth the effort. Good luck.