My thyroid has failed according to the endo. So many questions!!!

[Mickeydooley]

I have just had a review appointment at the endo clinic. I saw a very nice Dr whom I’d seen before and who had been very sympathetic. He discussed my symptoms, went over my family history (in relation to thyroid disease) again and examined me. I told him about the difficult time I’d been having lately. (2 bereavements in the last 3 months and all the associated stress). I also told him that my hypo symptoms had become much worse over the past 6 weeks including being very cold, exhausted, not dealing well with stress etc). He told me that the previous dr I’d seen had been worried about my suppressed TSH (First ever suppressed result after an increase in meds. And bloods taken only four weeks after the dose increase) but stated that some people only felt well when their TSH was suppressed. (Yay!) I pointed out that my last t3 and T4 results had only been 62% and 32% through the range, my basal temperature, resting heart rate and blood pressure were still all low and I didn’t feel like I was over replaced. He felt my hands and commented that they were ‘icy’ and agreed that I didn’t seem over replaced to him! He commented that my last bloods showed normal antibodies but I told him they had been raised in the past. He asked if I’d ever had a goiter which I did but it’s not evident now. He then said that it seemed that my thyroid had ‘failed’. I don’t know exactly what he meant and I wish I’d asked him! I was a bit shocked and thought that my thyroid function tests would have been a lot worse if this had happened? How can he determine if this is the case? Does it matter? I assumed that my antibodies were low because I have hashis and I was just going through a phase? They might rise again? How can he be sure my thyroid has failed? What happens now? He doesn’t want to see me for four months (I have been attending every 6 weeks or so). Why? Sorry for all the questions. Very confused now and a bit concerned.

[Jazzw]

Well, you already know you have hypothyroidism. That pretty much means your thyroid has failed—this isn’t a new thing, he was just stating the facts. The moment your doctor decided you should start taking replacement thyroid hormones is when he/she concluded that your thyroid was failing—that’s kind of the point. If it hadn’t failed, you wouldn’t need replacement thyroxine, would you? I’m guessing it’s just that it’s never been stated quite so bluntly? Did you think that one day your thyroid might fire back up again? I can see how you thought it might if it’s never been explained to you properly. Unfortunately, it’s not quite like that I’m afraid. Sometimes thyroiditis can be temporary and can get better but usually, even if it does get better it’s likely you’ll get it again at some point, and it tends to mean your thyroid will conk out altogether eventually.

How are you feeling on your increased dose? How much Levo/liothyronine are you on now?

[Mickeydooley in reply to Jazzw]

I knew my thyroid was failing. Just not ‘failed’. I knew that my thyroid wasn’t likely to get better and that I had raised antibodies which meant it was under attack. When my dose was initially increased I felt warmer and was sleeping better but I’ve had a period of prolonged stress and my hypo symptoms have come back. I’m cold, tired, not sleeping well and not coping very well. I’m taking 75mcg levo and 15mcg T3. I was diagnosed in 2007 and had been on 75mcg levo since then until August last year when I finally got a referral to an endo.

[Lora7again]

I have never heard that before and wonder what exactly he means by your thyroid has failed? Perhaps he means your thyroid is failing ... which happens when you become hypothyroid. Do you have any blood results for us?

[Mickeydooley in reply to Lora7again]

I had new tests done today. I’ll get results next week. Last results showed suppressed TSH and T3 and T4 62% and 32% through ranges respectively.

[Lora7again in reply to Mickeydooley]

Can't you log into your GP records online?

[Mickeydooley in reply to Lora7again]

No. Why? I have all my results.

[Lora7again in reply to Mickeydooley]

Put them on here then TSH T4 T3 and antibodies and any vitamin levels you have

I would take a screen shot

[Mickeydooley in reply to Lora7again]

TSH 0.02 (0.27-4.2)

FT3 5.4 (3.1-6.8)

FT4 15.2 ((12-22)

[Lora7again in reply to Mickeydooley]

They don't look too bad but everyone is different. How do you feel? Do you have any vitamin levels? B12, Iron and Ferritin, Vitamin D and Folate because they are always low in people with thyroid disease. When I was first diagnosed my vitamin D was 7 and felt very ill.

[Mickeydooley in reply to Lora7again]

Posted those before and was advised that all were good apart from a slightly low but in range Vitamin d and have been supplementing since. Last tested in July 2019

[Lora7again in reply to Mickeydooley]

How are you feeling now? Some people feel better with their T3 quite high in the range but as I said everyone is different. For example my TSH is 0.70 and I think that is a bit low for me but the GP thinks it is perfect. I will be doing my own medichecks test next week once I have got over this nasty flu bug. I use a vitamin D spray and have got my level up to a 100 now

[Mickeydooley in reply to Lora7again]

I’m feeling very ‘hypo’.

[Lora7again in reply to Mickeydooley]

Perhaps you need a slight increase