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Why would a GP not increase treatment for hypothyroid?

(18 Posts)
averywittyusername Sat 23-Apr-16 09:29:51

I saw GP yesterday with results of thyroid levels after 6 weeks of being on levothyroxine 50mgs, TSH was 4.6. I thought dose would be increased but she gave me a prescription for another month of 50...she was not the original prescribing GP and seemed to think I hadn't needed it in the first place, possibly because the blood test I presented to the original GP (8.7) was done privately so not on their records perhaps.

I'm happy with the levo and am much improved but I think it needs to be increased...but GP seemed to suggest it might be caused by stress, I'm in a difficult relationship at the moment and she knows about that, so I think she thinks that my symptoms will get better if I leave the relationship, perhaps a bit true but I think this is a separate issue, in fact I think I'll have more strength and ability to see the big picture if I'm at my best, health-wise. I had another blood test done yesterday and I will have another appointment with her once I've got the results of that.

I'm just wondering why, from everything I've read about getting the dose right, would she not increase the dose to 75? I'm getting impatient! My muscle aches are gone and several other issues which I now realise were symptoms are better sadly no weight loss yet but with TSH still high I'm thinking that there is still room for improvement?

Perhaps she's just waiting for confirmation (or not!) from the next test...but in all my extensive research on the web I've never come across any specific links between TSH and stress, anyone else?

PoshPenny Sat 23-Apr-16 22:06:06

I'd suggest you join thyroid uk and thyroid patient advocacy websites/forums. Treatment and diagnosis of hypothyroidism in this country is a disgrace.

RutDweller Sat 23-Apr-16 22:32:27

Message withdrawn at poster's request.

RutDweller Sat 23-Apr-16 22:35:44

Message withdrawn at poster's request.

Bichonsrock Sun 24-Apr-16 20:40:35

Next time you have a blood test try and book it for early am and don't eat breakfast before hand. Tsh is produced at night and levels are significantly lower later in the day after food. This is what I have gleaned from health unlocked thyroid forum, worth a look.

averywittyusername Sun 24-Apr-16 21:16:01

Thank you, all! Posh I've now joined thyroid UK (health unlocked site) and there's great information and support, I think everyone agrees that initial doses often need to be increased gradually. I just want to get on with it, I'm sure I need an increase, I was surprised when she mentioned stress as I think being under treated will be causing me more stress!

Rutdweller yes, I had another test done on Friday t the GP surgery, I will call Tuesday to get the results of that, it will be interesting to see if it is similar.

Bichon good point, all the blood tests I've had done were morning, but I didn't realise levels were higher later/after food! The GP test was done at noon whereas my private one was done at 9 am pre eating, I wonder what difference it will make.

clarella Mon 25-Apr-16 07:45:26

To add to bichons comment, take that days dose after the test. So, if you take at night, don't take the eve before, nor in the morning till after the test.

I must say the fasting test is a new one on me after 20 years of this but I've seen it in a couple of places recently including patient co uk. I was told by an endo about not taking thyroxine till after test, and consistently try for morning appts.

clarella Mon 25-Apr-16 07:58:35

Because of the long half life of t4 and the whole feed back loop etc, and how long it takes the body to heal, technically blood tests should be after 3 months. However, the earliest they can test (half life wise) is about 6 weeks.

Ordinarily, yes, they'd tend to bring it down a tad more. They'd hesitate for some reasons to do with the cause. Did you have antibodies?

digerd Mon 25-Apr-16 21:47:26

Annually I have a full blood test, lipids and Thyroid all on an empty stomach at 9.20am. Last time TSH was 1.6 but I had read about not taking Thyroxine before the blood test so took it at night before instead.
This year was all change with other health problems and had a full blood test at the Hospital after having breakfast 3 hours previously and taking my 50mcg pill .

Have not had the results yet so will be interesting to see if any difference.

BeauGlacons Tue 26-Apr-16 21:13:08

Is it worth phoning the GP surgery and asking if one of the doctors perhaps has a special interest in endocrinology. Then make a routine apt with him or her. The follow up doesn't have to be with dismissive doctor, you could change it

averywittyusername Wed 27-Apr-16 15:45:39

Ok...got results back from test on Friday, TSH 2.8...test done around noon, after thyroxine that morning plus a coffee and scrambled egg/ feta bake if I recall. Well that puts me in normal range as opposed to my private test 4.6 which I had done first thing in the morning with no meds on an empty stomach. So probably no increase, I have an appointment next Thursday so will hopefully discuss the disparity between the two tests. I just feel like the dose should be increased a bit but maybe I'm wrong!

clarella Wed 27-Apr-16 21:47:48

Im sorry to say I don't think they'd agree that the times or food would have that much baring on your Tsh - more likely that it's still stabilising. It's hard to prove due to the fact things could be changing in your system still on top of the inconsistency in tests.

However, technically there should no harm adjusting up a little- they might say that they're not keen as you may still be having some hormones directly from the thyroid.

It's worth remembering that you can fine tune to every other day eg 50 then 75, or 3 days of 75, 4 of 50 per week. I have to do this and it's quite a difference. (125/150)

BeauGlacons Wed 27-Apr-16 22:06:07

Clarella makes a very good point but I think you need another 4-6 weeks on 50mcg to see how you feel then, to let the levels fully stabilise via same time of day etc. You don't truly know the impact on tweaking yet.

I take 100mcg plus 25mcg three times a week. That seems to work for me.

Once it's fully settled if you can afford it, a couple of hundred quid on an endocrinologist who might recommend something more tailored to your GP might be worth it.

averywittyusername Fri 29-Apr-16 04:18:19

I'm feeling utterly broken now! GP result for TSH came back 2.8, fine, I have an appointment next Thursday but I don't imagine it will be increased. Feeling so so low...for some today reason I went to see a doctor in town we're living in with the thought of changing to their surgery, stupidly filled in the forms and got registered, then saw a GP who was somewhat sympathetic and seemed quite knowledgeable but was generally very dismissive and also questioned whether I should have gone on levothyroxine the first place, saying its often higher around menopause (I'm 51, post menopause which was a bit of a breeze for me symptom wise). So evidently it's all just me wanting to blame things on thyroid....when I was really thinking I was on my way to something good and a little uplift in the dosage would be even better.

I won't be stopping the 50 mgs but feeling really down about the whole thing. I'm hoping I can 'unswitch' and stay with other GP even though we've now moved out of their area.

averywittyusername Fri 29-Apr-16 04:25:12

PS thanks Beau and Clarella! Interesting that the GP test coming back at 2.8 was done at noon, one in morning with no coffee/breakfast was 4.3 or thereabouts. So perhaps still stabilising Or due to different circumstances? I wish I could get some clarity!

BeauGlacons Fri 29-Apr-16 06:54:41

Alevel of 2.8 is within the normal range and to have reached that in just a few weeks is actually fantastic. You really shouldn't feel broken about this.

Your thyroid has been a long time becoming hypothyroid and I think you need to give yourself some time to adjust. If, in three months you aren't feeling better, and if there's an underlying rise then it might be worth thinking about adjusting the dose.

I don't think the timing of just two tests is all that important in the early days. Your pattern and levels will smooth out and it's only in very recent times that anyone worried too much about thyroid test timings and caffeine and when the drug is taken. I've always taken mine at bedtime because that's shat works for me. My levels are usually between 1.35 and 2.85 taken annually fir the last 24 years. I feel no different whatever the level.

It would be best imo if you stay in 50mcg for a little while and see how you go. Your levels have come down brilliantly so far and a bit if stability of the dose to see how it goes may be wisest.

I appreciate it's hard coming to terms with something going wrong like this but in the grand scheme of things it's easily treatable and you are doing so well already in response to the treatment.

averywittyusername Fri 29-Apr-16 15:49:53

Beau thank you for the reassurance, I am pleased if the levothyroxine is working, I honestly know it's made a difference and I feel a bit defensive about it! No weight loss yet however and I felt I came across as a bit 'entitled' so to speak as I was complaining about weight gain (I went from 12.5 to 14 stone between Nov and Jan this year and it won't budge) to a women who was actually chunkier than me and as soon as I said 'thyroid' I got the impression I was was wasting her time when there were properly ill people she could be helping. But I'm staying on 50mgs and won't be bothering her again! And sigh... I guess I'll just stick with sensible eating and see what happens. I have been overthinking it all!

BeauGlacons Fri 29-Apr-16 17:03:09

An underactive thyroid is properly ill and it needs to ne treated. But, that's exactly what you are doing and it's early days yet. FWIW I only lost weight when mine became overactive (which I why it was mostly removed) and I was very ill indeed then.

Good luck

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