To think my gp is wrong to do this

(52 Posts)
waitingimpatient Sat 16-Jan-16 08:47:57

I am ttc and have had IVF/FET cycles.
Part of the initial tests was thyroid investigations which came back with higher than ideal TSH level
The clinic put me on levothyroxine.

I had not realised that the symptoms i'd had for years previously were due to this-tiredness, constipation, heavy periods and constant anaemia due to that, generally feeling awful. I had been seeing the gp a lot and kept thinking it was the anaemia.
I started to feel better and with tweaks in dosage I feel hugely better now.

However, currently I ha e to get private prescriptions which is ok (it's cheaper than nhs!) but obviously at some point I won't be under the clinic care so saw gp to see if they would prescribe for me now as I will need this for life whether ttc or not (I also had thyroid antibodies)

Gp refused and I've been told that when I'm not ttc/ under care of the clinic I will just have to stop the tablets then let my tsh levels rise and symptoms return before the nhs will treat/prescribe as my levels were 'subclinical' at 4.8 and they don't seem to care that I also have thyroid antibodies ?

I'm dreading it ! I don't want to have to feel that bad again it took months to get the dose right and now I'm anxious at some point I will have to stop medication and get ill again ??? I think the gp is out of order

patterkiller Sat 16-Jan-16 08:52:20

I assumed that private doctors diagnosis was valid within the NHS. I would phone the clinic to ask and then go to a different GP. Seems bonkers to make yourself intentionally ill.

Lonecatwithkitten Sat 16-Jan-16 08:52:56

I would try another GP, I am treated by a private rheumatologist and on his advice my GP checks my thyroid antibodies once a year and then when they appear ( which they will) will happily monitor my TSH ready to start treatment. I suspect it is the individual GP.

awfullyproper Sat 16-Jan-16 08:53:59

Get a second opinion. Will it get worse? What is the threshold? Is there a chance he got it wrong?

waitingimpatient Sat 16-Jan-16 08:56:09

Well apparently for ttc I can be prescribed by clinic but once that's successful/over they won't prescribe so my care falls back to gp but gp said with a sub clinical tsh plus antibodies and symptoms I still can't have it prescribed??

She keeps saying well tsh and symptoms are ok now but that's because I'm on medication !!! It's so frustrating they are saying it's only important for ttc then after are telling me no more medication and a tsh level once a year

I felt awful before I can't believe how I'd struggled and what a difference the medication has made and I don't want to go back to that

waitingimpatient Sat 16-Jan-16 08:58:04

They said if the clinic write they will prescribe but stop once my treatment is over and then go to the once a year tsh test

I didn't bother as thought no point as all that means is a more expensive prescription each month.

MotherKat Sat 16-Jan-16 09:00:16

It's a Pita because of the weight lifter black market, I'd second the request for a second go opinion, but be aware they keep most of us on ration levels, barely enough to keep us at the bottom line on the chart.
If it effects your mental health you may have more luck.

scaevola Sat 16-Jan-16 09:00:42

Your NHS GP is entirely correct to follow the NHS rules on what the levels have to be for intervention.

This isn't 'cuts' BTW, it's been around for yonks, despite there being some evidence that the level should be different (it's like drinking guidelines, lots of evidence, around for decades, but not everyone agree with where the 'likely to cause harm' threshold is).

Bottom line, I'm afraid is that if you want or need something the NHS does not fund, you have to go privately or do without.

Attitude in practice to co-paying is easing a bit at the moment, but that is very dependent on attitude of the government.

waitingimpatient Sat 16-Jan-16 09:06:21

I can't go privately once I'm not under the clinics care though ? And I certainly can't go without

I could barely function. Extreme fatigue that I put down to anaemia even when levels for that were ok I kept thinking it was coming back. Periods so heavy on two occasions I went to a and e as sorry tmi is was pouring out and I fainted and feeling generally day to day absolutely awful
I really can't go back to that

I know the cut off for nhs is 5.0 I think and my highest tsh was 4.8 but I have antibodies and had terrible symptoms at 4.8

I'm dreading it sad I can't go back to all that

leavemealone2015 Sat 16-Jan-16 09:10:34

If you are that convinced you need thyroxine and don't believe the GP then go to a private endorinologist( though make sure he also works regularly for the NHS)

Baddaybidet Sat 16-Jan-16 09:10:57

Your GP is following correct guidelines YABU.

WitchWay Sat 16-Jan-16 09:11:17

In my experience as a GP, patients with thyroid antibodies can be very difficult to treat. Often they have symptoms out of proportion to the blood tests & can have "overactive symptoms" with underactive bloods, & vice versa. I often refer them to the local Endocrinologists.

waitingimpatient Sat 16-Jan-16 09:14:02

Sorry I should have said I saw an endocrinologist for the antibody test and she wrote to gp but the GP said they would only prescribe when I'm ttc against advice of endocrinologist as my highest tsh was 4.8

I think I'll have to go back again to the private dr and get her to write a more strongly worded letter ?

jaketweeneyistooadvancedfor2 Sat 16-Jan-16 09:15:15

This sounds likes rubbish - I have sub clinical hypothyroidism, diagnosed by gp and have been on thyroxine for about ten years now, I'm also on a very high dose so sub-clinical is neither here nor there.
You also shouldn't be paying for your prescriptions as it's a chronic disorder and you qualify for free prescriptions. Again this was advised by my gp - you just have a card you show when you collect from pharmacist.
And like you say, of course your tsh levels are now fine, you're being medicated!!
Honestly, see another gp.

EssentialHummus Sat 16-Jan-16 09:15:48

Another hypothyroid person here saying you should try a different GP. I'm fairly new to this but different people feel "normal" at different levels. Or take yourself off to a private endocrinologist, get a prescription and have that sent to NHS GP? I used a combination of NHS and private to begin with - my GP was wonderfully supportive but the NHS endocrinologist was crap, and took ages to see.

It terrifies me how much a wonky thyroid can affect daily life.

Hope you are medicated and bfp soon!

Soooosie Sat 16-Jan-16 09:18:06

Wrote to the GP's practice manager. Complain. It will be a money issue and the GP trying to cut corners

Pleasemrstweedie Sat 16-Jan-16 09:20:21

The way I read the NICE guidelines, your GP should consider a trial,if treatment if you have symptoms compatible with hypothyroidism.

Having said that though, if you have a diagnosis you should be treated. Can you change your GP?

waitingimpatient Sat 16-Jan-16 09:22:03

All the gp keeps saying is that my tsh is below the level for nhs treatment

The endocrinologist said as I had symptoms that I needed to continue and that for ttc it should be 1-2 and after that then needed monitoring to make sure dose was still ok but gp has interpreted that as no medication once I'm not ttc so said they will not prescribe unless I'm ttc

johendy Sat 16-Jan-16 09:24:05

Gosh I was in the same situation with levothyroxine being prescribed during IVF after years of symptoms similar to yours, thoth my levels weren't as bad as yours. My GP sent me for blood tests at the 6 week check (I hadn't changed my dose from pregnancy) and was happy to continue to monitor and prescribe at a lower dose.

I would get a second opinion when you stop being under private treatment - hopefully a successful pregnancy means you can get tests at the 6 week check and if you have to keep ttc for longer, a different doctor might be more pragmatic than waiting for your levels to blow out when coming off the meds, then prescribing. Perhaps a copy of your blood test results rather than info about the prescription will be more convincing?

waitingimpatient Sat 16-Jan-16 09:24:36

I'm not sure what the levels for antibodies mean I was told just 'positive' my actual results are
Thyroglobulin ab 176.4 IU/L
Thyroid peroxidase 12.64

Maybe those levels are also under nhs guidelines but I was told it was positive

FattieDoc Sat 16-Jan-16 09:26:56

Soooosie- really complain??? The go is following NHS guidelines. So complaining will not achieve anything except to label you as a pain.
If you are so concerned see a private Gp

AwakeCantSleep Sat 16-Jan-16 09:26:56

Please try a different GP. I've been on thyroxine for many years. Initially my test results were borderline but as I had symptoms I was prescribed thyroxine on the nhs. I'm on 100 micrograms now and have been for a while.

I've also recently seen a private psychiatrist who has recommended some different ADs for me, and my GP was very happy to do my prescription on the nhs.

By the way, if you are on thyroxine on the nhs you get free prescriptions via a medical exemption card, so it's worth persevering smile

EssentialHummus Sat 16-Jan-16 09:27:23

I expect someone more knowledgeable along shortly, but high antibodies make me think of this:

www.thyroiduk.org.uk/tuk/about_the_thyroid/hashimotos.html

FindingNormal Sat 16-Jan-16 09:31:08

I was described as sub clinical with a tsh of 11. Are you sure your GP said the cut off was 5? I was given thyroxine and referred to NHS endocrinologist straight away (also ttc and had antibodies) who carried on seeing me until I got pregnant and throughout my pregnancy. Maybe get a second opinion, but my endocrinologist said for pregnancy they aim for tsh to be under 2 so if unmedicated you're at 4.8 then you would need some medication. You may find that once pregnant you'll get more NHS support. My care was amazing during pregnancy- my dosage increased throughout and ended up at about double the non pregnant starting dose (regular blood tests). Also was told when I'm ttc #2 to go straight back. I had had a miscarriage however which they think was caused by the antibodies.

AwakeCantSleep Sat 16-Jan-16 09:31:11

Essential that's exactly what I was diagnosed with 10 years ago.

OP you have symptoms, so you should receive treatment. I hope you can get it sorted. The difference that thyroxine has made to my energy levels and general wellbeing is enormous.

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