Dose advice

[Salphy]

Hi I've messed up a bit could I have some advice please?

Saw a locum gp about 6 weeks ago as my levels were gradually worsening. My TSH was 2.23 and the gp agreed to increase my dose from 75mcg to 88.5mcg (alternate 75mg/100mcg) as she said the aim of treatment is to have tsh below 2. She dismissed my t3 and t4 results but I was just relieved she was willing to increase me.

Anyway she told me to retest in 4-6 weeks so I did after 6 weeks. Got my results last Tues and my tsh had slightly increased and t3 lowered.

I couldn't get a gp appointment for a week and stupidly assumed she would increase me again because I still wasn't under 2 so I started taking 100mcg every day instead of alternating.

Been to see her today and she's refused to increase me because I'm within range and doesn't think she should keep increasing me as a non specialist so is referring me to a thyroid specialist.

I've been referred to an endocrinologist who specialises in gynae already in Jan but still on a 16 week waiting list and haven't heard a thing since I rang them and they told me it was ok because it was within the 18 week target...

So I'm assuming the thyroid specialist waiting list will be the same considering it's the same department (and let's be honest probably the same person lol)

So now I've messed up my medication and not sure how to fix it because I'm going to run out. In all honesty the thought of decreasing my medication again fills me with dread but I've got no choice. So what's the best way to do it?

Do I take 75mcg for a week then go back to 88.5mcg? Or start alternating again then do a few days with 75mcg over a couple of weeks?

I feel like I was feeling a bit better on 100mcg already but may have just been in my head because I knew something was being done. I'd just like reducing it again to be as painless as possible

Thanks x

[Jodypody]

I feel for you I really do. It's so unfair that you're just left in what feels like an abyss. Do you take your levo on the day of the test?

[Salphy in reply to Jodypody]

Thanks it's bloody awful

I take it straight after x

[DeeD123 in reply to Salphy]

Tell surgery you accidentally threw them away and could you have emergency prescription please. Worked for me, good luck

[Jodypody in reply to DeeD123]

Fab idea. Or your daughter/son chucked them down the toilet

[Salphy]

Thank you Ive told them I left some on holiday and they're going to do me a few days prescription. I've got enough random 25's lying around to bump up the rest. Do I just go straight back to taking 88.5mcg or so I need a couple of days of less to balance it out?

Technically I took 800mcg total over 8 days when I should have taken 708mcg. So should I skip a day of 100mcg?

[Hidden]

My advice .. never lie to your GP. Always be honest as the GP is only as good as the information you give them combined with the clinical and biomedical information they have for you

[Salphy in reply to Hidden]

Thanks. I didn't lie to her. I just didn't tell her I'd already increased my dose after my blood results as was expecting her to do it any way from what she said last time. Lesson learnt

[Hidden in reply to Salphy]

You should still have told her what you had done. All information is important.

I wasn’t accusing you off lying but advising that you didn’t take the advice of others who said to lie about the medication

[1tuppence]

Salphy, my GP asked me to drop down from 125 to 100 due to results. Results were flawed because of my own stupidity in taking Levo on day of mid afternoon blood test.

I agreed to drop back down. Then I noticed symptoms creeping back in again, so talked to GP, who agreed I could up it again to 125, as long as I accepted any potential risk of heart/bone problems. I had felt very well on 125, knew my results were skewed, knew from this forum that potential problems with bones/heart more likely with under-medication and so was very happy to go back to 125.

Interestingly, a few weeks later I felt incredibly tired...deathly tired, for no apparent reason... so much so I wondered if there was something seriously wrong with my health. Possibly a week later I began to feel normal again.

SInce then I've compared timing of dropping dose and then returning back to 125...... and I wonder if it was my body's way of showing me just how much I needed 125, as on 100 there hadn't been enough in my system, and it had left me with a deficit that needed to be made up, before feeling well again.

I do react quickly to Levo. My body needs it. I went directly from 100 back to 125.

This is simply my experience, and not advice to you. I wish you well, and am so sorry you are having this difficult time.

There are others with far more knowledge than me who will hopefully be along to give you good advice. My understanding is that once on Levo TSH is best around 1 or lower, and your T4 and T3 are very low in range.

[Salphy in reply to 1tuppence]

Thank you. I wish she'd have said that. I practically begged to increase in the meantime whilst I was on the waiting list but she said no

I'd understand if they'd reduced a little and she wasn't sure but the fact they got worse should tell her I need more

Did you tell her that the bone/heart risks were higher being hypo than hyper? I didn't know this x

[1tuppence]

My GP is a man. No, I didn't say anything re risks, simply listened to what he had to say. He'd phoned me when my results came back, and he was alarmed, His first question to me was "How are you feeling?" I hadn't yet got the results he'd seen, and said I felt fine, thank you. I'd no idea why he seemed so concerned until he told me my results, and I went in to see him. Because of the results he wanted me to drop the dose.

I agreed, but will not agree again. The impact on me was not good. I can only go on what I've learned from this forum, and how I feel.

Several weeks later I went back to see him as symptoms were returning, and said I wanted to up my dose back to 125. He agreed and asked me to return for another blood test in 6 weeks. I haven't done so. In the meantime I have moved house and had a great deal of building works done here both before and after the move. No time, and no need for drs

I feel good, and am happy for now with where I am.

A previous GP was hypothyroid himself. He only had his TSH tested, and knew nothing re the importance of T4 and T3 levels. Because of this forum, it seemed as if I knew far more than he did himself. Fortunately for me, this GP was also open-minded enough to eventually ignore my blood test results coming back as "normal, within range" and listen to my symptoms. When asked what he thought was wrong with me if he totally ignored my results, he said he was convinced I was hypothyroid, and on that basis offered me a trial of Levo.... very low dose of 25. It had immediate effect, and over the months my dose increased until symptoms disappeared.

I wonder if there is another GP in your practice you could see, having learned as much as you can from this forum and the wise and helpful admin?

[Salphy in reply to 1tuppence]

Glad you're feeling better. Nice to hear positive stories.

There's only 2 gp's at my surgery currently. The main one who owns it is happy for tsh to be below 4.5

This one who I saw is a locum covering maternity and did say aim for below 2. But because the last time she increased me hasn't made any difference she doesn't want to increase me again until I've seen an endo.

I changed to this surgery after my first blood test in Dec 2016 showed tsh of 5.5 and my old gp told me it was barely high and clinically insignificant. Seems I haven't got a lot of luck with gp's in my area x

[1tuppence]

Having had another look at your results I can see you have above range antibodies which speak of Hashimotos. Has your GP confirmed this for you? Perhaps check out Hasimotos on here, and see what others have found helpful?

[Salphy in reply to 1tuppence]

I basically told my gp I had it. She wasn't interested and disregarded the t4 and t3 result as they fluctuate throughout the day... Lol. X

[Hay2016]

Say a box was destroyed so you need refill early. Won’t be the first time it’s happened.

[1tuppence]

Is it time to search out a more informed GP? Maybe ask for PM's from folk on the forum who live somewhere in or near where you live?

Really hope you find some help.

[Salphy in reply to 1tuppence]

Thank you unfortunately there aren't any others in my area. I've had the list from thyroid UK and only had one reccomendation from my post but it's for a private endocrinologist.

Its somebody who happens to work at the clinic I have been referred to but on a 4 month waiting list for. She can fit me in within 4 weeks privately for £350.

I'm not sure what to do. Part of me thinks just do it then maybe she can review me on the nhs referral to save me money. The other part of me thinks I'm silly to pay for something that could be free. But then there's no guarantee I'd get her.

Then another part of me worries that my results will be skewed now I've had a week of taking 100mcg so if I do it too soon she won't get an accurate blood result. I don't know how long it would take to un-do it