High TSH, High T4, Low T3 - advice please

[Thyroidsam]

Hi everyone, I posted on here around 6 weeks ago after feeling worse and worse and getting nowhere with my GP/Endo.

I had RAI back in Feb 20 and since coming off block and replace (due to the reaction after RAI), I can’t say I’ve felt well for more than a couple of weeks at a time. I really started going down hill in Oct 21 with my T4 rising.

I’ve just had my results back from Thriva after making some changes near the end of Nov 21.

I’ve religiously stuck to 100mg levo daily, taken as advised, with water and at least 1hr before food. I took the blood test first thing in the morning, didn’t take levo etc.

Likewise I have been supplementing with vit D. B12, folate and magnesium.

I’ll share previous vit levels on here too (I was low in folate back at the start of Dec).

Initially on reducing my levo from 125mg a day (I was getting horrible side effects), I felt slightly better, However, by week 4 of the lower dose I started to feel absolutely terrible again along with some of the levo side effects. I’m now getting increasing miserable etc and struggling to function, I presume as a result of reasonably low T3.

I’m presuming I am a poor convertor due to the RAI?

I managed to get my old TFT’s from an old GP surgery to compare how I was when I’d come off block and replace back in 2016. You can see at that point my T3 was higher and my T4 just at the top of the range. I appreciate the nhs tests I’ve been having done since then haven’t been under the strictest conditions, however, it’s clear that at no point since being on levo after RAI that I’ve been within range for T4 and had a good T3 level.

I’m going to attempt to share my evidence with my GP and eventually Endo (waiting lists are terrible) and push for a T3 trial as I can’t tolerate higher doses of levo.

However, in the meantime, I’ve sourced T3 and I’m guessing I should drop my levo down to 75mg a day and start on 5mg of T3 a day?

At the moment I’m willing to try anything as I feel so unwell….

Any advice would be greatly appreciated.

[Thyroidsam]

These were my vitamin levels at the start of Dec 21. I ignored the thyroid results as I had taken a week off taking levo at the end of Nov and then dropped to 100mg daily - therefore the information would be inaccurate.

Vit Results

[Thyroidsam]

I’ve included all my old nhs blood tests (with limited info). The blue area indicates when I felt well and wasn’t on block and replace after previously being overactive. The yellow in 2019 is when I went overactive again and then back on to block and replace. The yellow in Feb 20 is when I had RAI and went overactive. I then came off block and replace around Sept 20, from then on I’ve had an awful time. Dec 20 I was on 150mg then up to 175mg but felt so ill with Levi side effects. From around Feb 21 I was on 125mg with a day every 3 taking 150mg. I’ve not been stable at all through 2021 and you can see I’ve always been over range for T4. I was consistently on 125mg a day from around Sept onwards and it was Oct that I started to feel even worse then I did with my T4 creeping up and up.

NHS results

[Batty1 in reply to Thyroidsam]

You have been through a lot and hopefully someone who is experienced with block and replace will come along and help you out.. hang in there!

[Thyroidsam in reply to Batty1]

Thanks! It's literally been torture since RAI and stopping the block & replace. Maybe 14 months and now i'm the worst i've been. I've probably learnt more from this forum in a few weeks than the entire time I was being "advised" by the NHS...

[Batty1 in reply to Thyroidsam]

Its a shame we have to come to forums like this because those so called professional let us down over and over again…. Im thyroid-less too from cancer and these past 5 years have been a disaster as you watch your old self slip into something you can’t recognize anymore… awful.

[Thyroidsam in reply to Batty1]

Yep, you forget what "normal" life was/is.

[Batty1 in reply to Thyroidsam]

Their is another post here someone else is also talking about getting ready to do RAI …. Interesting responses.

[Thyroidsam in reply to Batty1]

I'll have to have a read of it, thanks. From my own experience, it's definitely changed me, although looking back now (when I was first on block and replace after becoming overactive), the symptoms of perhaps having too much T4 floating around me are now apparent (I was on 125mg back then I think). I think the only time I felt "normal again was when I came off block and replace, having maybe 3 years before I went overactive again. The only positive for now is that I have the evidence needed to ask my Endo "what next???". I've shared the info with my GP today and have a NHS blood test tomorrow morning. The only trouble is the wait for some form of response and next steps, which could be weeks to months! I'm hoping that if I get some advice on here, i'll self-medicate until the NHS can help.....

[Batty1 in reply to Thyroidsam]

Thats a darn shame. It just seems like they have no rush to address people living with thyroid disease. I hope your having a complete thyroid panel not just TSH, FT4 and antibodies and make sure you do the test early as possible before eating and taking meds, again this is also something that is addressed here often just look through other post for SlowDragon she has a giant list of what is needed and what to do.

[eeng]

I'm not an expert, and don't take T3 myself, but I would expect that unless you are reacting to the fillers in your Levothyroxine it's the low FT3 levels that are causing your symptoms, not the high FT4. I ended up being overmedicated on Levothyroxine once and my FT4 was nearly 30, but I felt fine. Also you say you used to take 125/150mcg of Levothyroxine at one time but are now on 100mcg. So if it was me I would begin taking the T3 without lowering the dose of Levothyroxine, at least to begin with. Then at least you would know what was causing any changes you might feel. Once you are on 10mcg of T3 a day you could start reducing your Levothyroxine and see what happens. From what I've read here you need to make changes with T3 slowly so that your body tolerates it. It's possible you will end up on T3 only, but it will take a while. Your TSH will drop to nothing once you take T3, which might scare your doctor, but that's normal apparently.

[Thyroidsam in reply to eeng]

Good point. The trouble is the symptoms of red eyelids, glazed eyes, tender side of thyroid, general feeling or sickness, dry mouth, banging headache etc. eased when I stopped taking Levo for a week when my FT4 was up around 30. After about 4/5 weeks at the lower dose of 100mg daily, those symptoms (slightly milder) started to reappear (with my FT4 still over range around 23).I also had those symptoms at the same intensity when I first went back onto levo following a few weeks off block and replace (to see if my thyroid was dead after RAI). At that point my GP kept upping my daily dose from 100mg to 125mg to 150mg and then 175mg, the whole time I was in bits with the above symptoms. It’s was only when I dropped to 125mg again that they eased. I also found that during last year, when I upped my dose from 125mg to 150mg, with 5/6 days I was getting the tender sensation on one side of my thyroid and some of the other symptoms. As soon as I backed off to 125mg, the symptoms eased over a few days.

I think to get my FT3 up to a decent level and banish the other symptoms I’m having, I’d need to be on 150mg/175mg a day, but then I’d be well over range and feel horrible. Looking at my old blood results before I went overactive again, I was near the top of the range for FT4 but never over it, with a decent FT3 level. I’ve not been able to achieve that since RAI and on T4 alone.