Has anyone used a private GP to get prescriptio... - Thyroid UK

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Has anyone used a private GP to get prescription after NHS GP has refused?

Vicm78 profile image
31 Replies

Hi

Have posted on here a few times regarding having low Free T4 levels on numerous tests (within range for TSH/Free T3 but relatively low in range) but GP has refused to consider trialling thyroxine despite a family history and me having a whole set of symptoms. I'm told I'm anxious/depressed and should go away with a prescription for antidepressants.

At my last appointment I was told quite categorically that they will not be treating my current symptoms and there is nothing they can do apart from refer to NHS endocrinologist. All departments are closed for bookings at 3 local hospitals due to NHS crisis so no idea when I will get an appointment. I saw a private endo who was next to useless.

I am now considering paying to see a private GP to see if they will give me a private prescription to trial thyroxine. My cousin has recently had similar blood results to me and her GP gave her thyroxine due to her symptoms. She is feeling so much better.

Has anyone had any experience of using a private GP? Are they more open to listening and trying out a treatment plan or do they just tend to shut you down like my NHS GP has?

Thank you

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Vicm78
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Clutter profile image
Clutter

Vicm78,

Did you discuss with your GP the possibility that FT4 below range with low-normal TSH indicates secondary hypothyroidism?

healthunlocked.com/thyroidu...

Vicm78 profile image
Vicm78 in reply to Clutter

Unfortunately yes and they dismissed it and told me my symptoms were due to anxiety. Told me there is nothing they could do for me at this point.

Clutter profile image
Clutter in reply to Vicm78

Vicm78,

Did you show them the NICE link I included?

Vicm78 profile image
Vicm78 in reply to Clutter

Yes thanks but they weren't really interested I'm afraid. She just looked at the blood results I had for FSH /LH, prolactin and testosterone and said they all look normal so you can't have a problem with your pituitary. I'm not sure she knew what she was doing.

Having had time off sick (around 10 weeks now) and eventually deciding to resign, I have been offered another job with less responsibility elsewhere around mid February. Im just nervous about the idea of returning to work and starting the cycle of exhaustion again. I was hoping I could maybe go to a GP and get a prescription now so that it might improve things by the time I start working again. It pains me that my sick certificate still reads 'anxiety disorder' when I know that there is far more to it in reality.

Also a bit down as I have been on Slimming World all of last year and successfully lost 4 stone however it has been such a slow process. I've persevered but it took me from May to January to lose 1.5 stone which I feel is really slow. I had 3 days off the eating plan at Christmas and gained 4.5lb. It is prob going to take me 3-4 weeks to shift that weight again. I'm still persevering but I get frustrated when I am eating well, drinking 2-3 litres of water a day, exercising 3x a week and not drinking caffeine and hardly have alcohol now. Others only put on 3lb having had the whole of Dec off the eating plan! Just doesn't seem fair! Could secondary thyroid attribute to my slow weight loss?

Thanks for your help

Clutter profile image
Clutter in reply to Vicm78

Vicm78,

Any form of hypothyroidism can cause weight gain. It's going to depend on which doctor you see whether or not s/he considers low FT4 to be a problem/secondary hypothyroidism. Email dionne.fulcher@thyroiduk.org for a list of private practitioners. If a private GP won't prescribe Levothyroxine write a post asking members to PM you where to obtain Levothyroxine online without prescription.

Vicm78 profile image
Vicm78 in reply to Clutter

Thank you. That's some useful advice.

Is it relatively safe to obtain and take levothyroxine without medical advice?

Clutter profile image
Clutter in reply to Vicm78

Vicm78,

A doctor or pharmacist wouldn't say so. I tend to think if your doctors aren't helping you have to help yourself. If you don't feel any improvement a few months after taking Levothyroxine you can stop taking it.

Vicm78 profile image
Vicm78 in reply to Clutter

Thank you. A good way of looking at it. I will pursue this further.

shaws profile image
shawsAdministrator in reply to Vicm78

I think you should source your own, then you can also get blood tests occasionally and you will probably feel much better.

We used to be prescribed NDT upon our clinical symptoms alone and no blood tests invented then. We were given increases until symptoms resolved. If they didn't resolve, they assumed we had something else.

I think if we tick off symptoms we have it will prove we need replacement hormones.

It is safe to take thyroid hormones without medical supervision. I have done so and I am happy that I'm well.

Also we have the opportunity to try alternatives if levo isn't working so well.

thyroiduk.org.uk/tuk/about_...

Vicm78 profile image
Vicm78 in reply to shaws

So maybe avoid the £100 for private GP and find my own source? Just a bit wary that it won't be monitored. For example my cousin has just started taking levothyroxine and she is regularly monitored. In fact her dose has just been increased by her GP from 25mg to 75mg. How will I know how and when to increase if necessary?

SlowDragon profile image
SlowDragonAdministrator in reply to Vicm78

You will need to get privateblood tests to monitor yourself.

Hundreds on here are forced to do thus, even if they are getting Levothyroxine from NHS as NHS cost cutting means inadequate tests

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Bloods need testing 6-8 weeks after each dose increase.

Vicm78 profile image
Vicm78 in reply to SlowDragon

Thanks. I've used Medichecks recently. I didn't think of using them to monitor it myself if I choose to self medicate. I'll do that.

My mother in law is a pharmacy assistant and she suggested that GP might not be prescribing because once on thyroid medication you are entitled to free prescriptions. Do you think this is also why they are reluctant to prescribe?

SlowDragon profile image
SlowDragonAdministrator in reply to Vicm78

Who knows......it's madness

There is "bonus" of £1600 apparently for diagnosing depression

No wonder rates of depression are increasing

Vicm78 profile image
Vicm78 in reply to SlowDragon

No wonder I've been diagnosed with depression and anxiety 100 times over then!

SilverAvocado profile image
SilverAvocado in reply to Vicm78

What I did before I started self medicating was stuck around and read the forum for several months.

Particularly look at knowledgeable members interpreting other people's blood tests. You'll soon know enough to interpret your own tests, and figure out what other measurements you want to make. Pulse and temperature are good to start soon, so you get a good baseline of where you are right now.

Vicm78 profile image
Vicm78 in reply to SilverAvocado

Thanks. I have been posting my bloods and reading advice on here since I was signed off in November.

Despite going to GP and Endo I am no further on at all and feel pretty crappy still.

Do you mind me asking where you get your medication from and how you started the process of self medicating please? I understand if you would rather not share or if you are happy to I don't mind you messaging me privately.

How did you go about it?

SilverAvocado profile image
SilverAvocado in reply to Vicm78

Just as in described, really. I read the forums for probably a year or so. I then saw Dr Peatfield who is a very popular doctor. I'd read his book, too.

That gave me the final push, because he encouraged me to buy my own.

Reading the forum gives all the information you need.

I think started taking pulse and temperature. I take mine on waking and at night, but there are other protocols.

I get blood tests every 6 weeks, and adjust my dose based on that.

Sources can only be shared in private messages. You need to decide what form of hormone you want, NDT, T3, or Levothyroxine. Then make a new post asking for members to share their sources. I'm on my phone but I'll see if I can find mine and message you.

in reply to Vicm78

You could try Blue Horizons Thyroid 11 blood test would give you most results that you need. Then post them with results plus ranges also exactly what you were taking at the time.

It would enable you to post them on this site and then people could help you as they have me.

I self medicate now never pay Doctors or Endos they are no different to NHS apart from the fact they cost money.

I have no thyroid and feel very well and not overweight either. I am 71 years of age.

Vicm78 profile image
Vicm78 in reply to

Thank you. I have had all thyroid checks done through Medichecks and posted on here. Most people said it looks like secondary hypo. Everyone has been very helpful. I guess I wanted to do everything properly by going to GP/Endo etc but I'm getting nowhere and feeling sick of being unwell.

Do you mind me asking where you get your medication from please? I understand if you would rather not say or if it's better I am happy for you to private message me.

I'm glad you are feeling well.

Blackapril80 profile image
Blackapril80 in reply to

Bunnyjean I have no thyroid and am overweight I'm 74 this June coming to the end of old Metavive need to find something soon Can you please PM me how you get your meds.

SilverAvocado profile image
SilverAvocado in reply to Vicm78

The first thyroid symptom I'm aware of, looking back, is being in Weight watchers and losing weight extremely slowly.

Although knowing what I know now, you will be increasing your illness by restricting calories. If you start eating more normally, and resting more, you should feel less symptoms. Be kind to yourself and support your body, don't challenge it.

Vicm78 profile image
Vicm78 in reply to SilverAvocado

Thank you. Ah I see. Interesting.

On Slimming World you can eat a lot of food and I do tend to eat a lot, but yes you are right. The weeks when I exercise more and do the more restrictive version (cutting carbs) I end up with rubbish weight losses! It just doesn't make sense!

I think I am frightened of going back to work without some sort of treatment in place. The resting up (while I have been signed off sick) has been great but it has also allowed me to realise that I was feeling rubbish all the time and need a lot of sleep. I was just powering on with work and kids before it all took its toll.

SilverAvocado profile image
SilverAvocado in reply to Vicm78

Yea, work is so hard because I think with the fatigue we get, only large amounts of rest can improve the quality of what you can do the rest of the time.

I'm not so familiar with Slimming World, but I know with Weightwatchers the calorie defecit it aims to create is very large. Much larger than anyone suggests for healthy weight loss.

Hypo people deal very badly with having less calories, as it tends to reduce your thyroid hormone energy metabolism. Some hypos love low carb, and others, like me, get very sick with it. You may actually lose more weight, or maintain more easily, if you eat a bit more food.

SilverAvocado profile image
SilverAvocado in reply to SilverAvocado

Or just accept that you've got a serious illness, and a symptom of that is you're going to be bigger than you'd like to be. Spend the emotional energy you would be spending on sticking to the diet and going to meetings on something enjoyable like a hobby or pampering for yourself. Or even just naps :p

Vicm78 profile image
Vicm78 in reply to SilverAvocado

It's not really the size that bothered me. A year and a half ago I had ballooned (put on 6 stones) because I had been put on antidepressants.I then got a pressure fracture in my ankle due to the fact that I was so heavy. I then found out that I have fused ankle bones in both feet and had to have steroid injections for the constant pain I was in. Losing weight has allowed me to pretty much walk again without pain. I can now exercise again too. It's been a rough old road and as I said to my GP - I've done everything you would advise someone to do in order to feel well and I still don't! They just refuse to help.

I am lucky as my husband is happy for me to nap when I need to and he looks after kids. I do take care of myself on the whole but just hate feeling rubbish.

Thanks for

Your kind words.

Vicm78 profile image
Vicm78 in reply to SilverAvocado

I agree! So many times people at my Slimming group have said I have had rubbish weight losses because I haven't eaten enough. I think it's true for me! I'm also much better at losing when I eat carbs!

One week I did 6 exercise classes, followed the diet 100% and only lost 0.5lb!

Do you mind me asking - do you get affected by your menstrual cycle? My symptoms seem to magnify 100% close to menstruation especially my tinnitus, anxiety dizziness and tiredness.

I'm just not sure what to do next really. I'm so close to self medicating but would rather not if I can avoid it.

SilverAvocado profile image
SilverAvocado in reply to Vicm78

Yes, I do get much worse symptoms around my period! All the hormones are very linked!

SilverAvocado profile image
SilverAvocado

I've just had a look thru your previous posts, and seen what the issue is. Looks like central hypothyroid.

I think you've got two choices. You can either 1) Self medicate and forget about doctors 2) Start up a systematic campaign of getting through to them. Make an appointment for every week. Cycle through every GP at your practice, asking for either a trial of T4 or a referral to an endocrinologist. Once you've seen every GP and some more then once, you know they won't help you so change practice and start again.

A friend of mine had good success with this technique, she only had to go in a handful of times before she got the referral.

You're in a doubly difficult position because doctors know very little about Central hypothyroid. They think it's very rare, which of course it will be if they never diagnose it! Also, it's possible you will get an acknowledgement it is Central hypo, but they may still think it's not extreme enough to give treatment for. Some people do wait years being ill before they get treatment. And even then doctors are terrible at administering it!

Vicm78 profile image
Vicm78 in reply to SilverAvocado

Thanks for taking the time to look through everything. I've tried 2 GPs a couple of times at my surgery, another 2 to go now! Although one of them I haven't asked is the one who told me I am a recurrent depressive so won't hold out much hope there!

Will keep persevering as you suggest.

Have an endo referral but can't book an appointment at the moment at any of my 3 local hospitals due to NHS crisis. I've seen a private one but she is absolutely useless!

And so it goes on.......!

SilverAvocado profile image
SilverAvocado in reply to Vicm78

Good luck!

Linthyro profile image
Linthyro

A bit of a merry go round really, best seeing a private endo.

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