Endocrine Nurse appointment but no plan in place plus weight loss

[Otto11]

Hi everyone It's me again. I hope you are all doing ok.

Last time I posted I was feeling really unwell on my dose of T3 but had an upcoming appointment on 6th March. On the day it was a different Endocrine Nurse who I didn't know & was difficult to understand due to her accent but basically told me that it wasnt a magic wand & I probably wouldn't get any better as I already had chronic Fatigue. She was really dismissive & wouldn't let me get a word in edgeways. I had my bloods done prior to the appointment following the protocol which were TSH 0.03 (0.27-4.2) T4 14 (11-22) & T3 4.5 (3.1-6.8). she told me all was ok & said she would call in 4 to 5 months & if ok would discharge me.!!! I want't expecting that. No mention of further blood tests & I'm also on a 6 month trial which will be up in June. I didn't have the energy to discuss this with her but felt really let down.

I decided as I had no plan in place whatsoever I would call Endocrine department & leve a message. Anyway fast forward to Tuesday this week when my original Endocrine Nurse called me. she was lovely & totally agreed that a call in 4 to 5 months was not acceptable. I discussed the fact my 6 month trial would run out before then so she made me an appointment there & then to see the Endocrinologist in July face to face. she also said to have a further blood test at the beginning of May ( my last one was 1st March). I asked about my T4 being a bit low & she agreed but said it may be down to timing. at least she agreed. I feel so pleased with myself for deciding to contact them again & now I have a proper plan in place I feel so much better. I've actually increased my Thyroxine dose a bit to 87.5mcg rather than 75mcg & will see how that goes. I'm really pleased with myself 🙂

I do have an important question which I forgot to ask her so wondered if you can advise. I've lost a lot of weight so much that i'm a bit concerned. I'm 5ft 8ins & a size 10/12. I've always been about 60kgs. I had lost weight last year due to surgery & not mobilising much but since February when I was 54kg I have dropped to 49kgs which is ridiculous. Could this be due to the T3 & if so what should I do ?

[greygoose]

TSH 0.03 (0.27-4.2)

T4 14 (11-22) 27.27%

T3 4.5 (3.1-6.8) 37.84%

Weight-loss can be a hypo symptom. And, looking at your percentages through the range, you are still hypo. Your FT4 is not 'a bit low', it is much too low, as is your FT3. And that has nothing to do with timing.

That said, your low TSH could be due to timing. What time was the blood draw?

So, despite the low TSH, you need an increase in dose to bring your Frees up to around 75 % through the range.

[Otto11 in reply to greygoose]

Thanks. I had bloods done around 9.30 as there was a big queue. So am I’m doing the right thing by increasing my Thyroxine a bit to 87.5mcg?

[greygoose in reply to Otto11]

I think you're going to need quite a bit more than that to get to your sweet-spot. But starting with an increase of 25 mcg should put you back on track.

[Otto11 in reply to greygoose]

Thanks. I’m going to have to try & get hold of some more medication then. Our GP’s won’t allow us to stockpile. But I will try.

[greygoose in reply to Otto11]

Makes me sick, this business of what GPs will and won't 'allow'! They are not our jailers, they are our advisors, and it's time they realised that. And they shouldn't be advising on things they don't understand!

You can buy levo on-line without your doctor's 'permission'. But I can't tell you where. Write another post asking just that, and then those that know can PM you with their trusted links.

[Otto11 in reply to greygoose]

Oh that’s great. Thanks you. I’m almost running out of meds before I can re order. It takes 14 days approximately for GP to sort & send to Boots to issue. We have to order 14 days before we need them & often won’t let us order at that point. Crazy system. I’ve just had a thought I have a few strips of 100mcg tabs but guess it would be hard to cut into quarters accurately.

[greygoose in reply to Otto11]

Doesn't matter how accurate it is because over the course of 4 days you will be taking the whole tablet. And T4 is a storage hormone so not for immediate use.

Or, you could cut them in half and take on alternate days.

[Otto11 in reply to greygoose]

Yes that makes sense thanks.

[Otto11 in reply to greygoose]

This is what happened when I tried to order Thyroxine 50mcg as I only have 1 & half strips left. They refused to issue!!

Text document

[greygoose in reply to Otto11]

How can they refuse you your thyroid medication? I don't understand. You need it for life, don't they know that?

[Otto11 in reply to greygoose]

I’ve requested it too early. They keep it right to the line so we can’t stockpile.

[greygoose in reply to Otto11]

That's disgusting. Treating patients like children!

[Lulu2607 in reply to greygoose]

Hi. Genuine query greygoose-I didn't think weight loss to the extent that Otto has experienced was a hypo symptom, Otto has lost 11kg which is quite significant. Won't they lose even more weight if they increase their levo dose as you suggest. Weight gain even with poor appetite was one of my hypo symptoms before being diagnosed. Isn't that usually the case?

[greygoose in reply to Lulu2607]

It's very often the case, but not always. A significant percentage of hypos have weight-loss as a symptom. We see it quite often on here. Levo is not a weight-loss drug, and optimising thyroid hormone levels should also optimise her weight, not make her lose more. And hypo weight-gain has little to do with appetite because it isn't usually fat that's gained, it's more likely to be water-retention. Which has nothing to do with how much you eat.

[Otto11 in reply to greygoose]

Thanks for explaining that. I am quite worried about the weight loss although I have had a virus recently & not eating anywhere near my usual amount. But it’s still too much loss so thought it could be down to T3.

[Otto11 in reply to Lulu2607]

Thanks for asking that question. I always thought weight gain was a symptom of hypo too. That was one of the things I couldn’t understand as I had virtually all the other symptoms but not weight gain.

[greygoose in reply to Otto11]

The thing about hypo symptoms is that there are a hell of a lot of them, due to the way the body attempts to cope with low levels of thyroid hormone. And, you don't have to have them all to qualify - doctors don't know what they all are, anyway.

And, everyone has their own personal symptom list, because we're all different and our bodies react in different ways.

Weight-gain is often a symptom of hypothyroidism, but that doesn't mean that everyone who is hypo gains weight. The don't. Some stay the same weight and some lose weight. It all depends. So, you can never say that this, that or the other is not a hypo symptom because it easily could be - and never let a doctor brainwash/gaslight you into believing that your symptoms are 'nothing to do with your thyroid', because they know nothing about it!

[Otto11 in reply to greygoose]

Thanks that makes sense. My weight never changed for years whilst I was undermedicated as I thought weight gain was one of the main symptoms so never thought that I might be undermedicated.

[SlowDragon Administrator]

what are your most recent vitamin results

What vitamin supplements are you taking

How’s your appetite

When hypo it can be hard to find enthusiasm to eat

Or poor nutrient absorption

[Otto11]

Thanks. My last Vitamin bloods were November 23. They were Folate 8.8. (>3.9). Ferritin 77. (30-260). Vit D 89 (30-100). & B12 755. (180-900).

I have 6 monthly B12 injections GP refuses 3 monthly. I’m taking Methylfolate drops in water & B Complex but only twice a week as I don’t like them at all. I’m also taking zinc tablets as mine was a bit below range.

I don’t really have much of an appetite at all these days. Nothing interests me lately.