I want to scream... How do I persuade my gp to... - Thyroid UK

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I want to scream... How do I persuade my gp to give me a trial of thyroxine

daisydorset
daisydorset

Having been on thyroxine from the age of 20 -28 then was taken off by an obstetrician.I have now for the past 8 months been experiencing symptoms , extreme fatigue , cold , bradycardia weight gain. 7kg in 8mths . I have had numerous blood tests. Antibodies are negative but THS has fluctuated 5.8, 4.1 and recently 10 . I have just come off the phone from the gp and crying with frustration. She asked i wanted to up my antidepressants. Im not clinically depressed and said she has spoken to the hospital and they have suggested another TSH and antibodies in 2 months time. I dont think i can carry on for another 2 months. I spend weekends asleep after trying to keep going all week. Im a nurse with a very busy caseload which doesnt help.

Any suggestions who to go to ? im on the south coast of England

24 Replies
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SlowDragon
SlowDragonAdministrator

Presumably they are only testing TSH which is completely inadequate

A TSH of 10 is definitely hypothyroid

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus both TPO and TG thyroid antibodies, also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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 ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Median TSH graph in general population

healthunlocked.com/thyroidu...

TSH daily variation

healthunlocked.com/thyroidu...

Apparently 20% of patients with Hashimoto's never have raised antibodies

thyroidpharmacist.com/artic...

Come back with new post once you have results of full testing

Ive had bloods done by medichecks and she wanted local bloods. GP didnt do antibodies but medichecks did and they were normal. ive had every blood test going by gp to rule out other thibgs but accept i know how i feel

SlowDragon
SlowDragonAdministrator
in reply to daisydorset

So what are your vitamin levels like? Are they low?

Do you have any gut symptoms?

No ive had them all done and normal. I think the problem is im now 54 and they cant get why its now im having problems. However when she read out bloids going back as far as 2004 my tsh was at times around 4

SlowDragon
SlowDragonAdministrator
in reply to daisydorset

What's in range is often not good enough

Vitamin D needs to be around 100nmol

B12 and folate towards top of range

Ferritin at least half way in range

You definitely need FT3 and FT4 tested

How long ago did you get full Medichecks testing?

Can you add actual results and ranges for all that you had tested..perhaps on new post so more people see it

Can't help with south England endo- but just moral support - that is ridiculous that you've even had a TSH of 10 ( which we all know is high anyway) and you've not been given levothyroxin, plus of course a long history of being on it when younger. Anybody would think you were asking for costly T3! Hope you get help asap.

I'm from Dorset. You won't find clued up GP here.

I've changed surgeries about 7 times in last 10 years - not once I had a pleasure to meet intelligent and informed GP.

Your best bet is to get referral to Southampton or further London endocrinologist.

Southampton has couple of thyroid specialising endocrinologist.

Do not go to Poole hospital endocrinologist - the head of that department is completely clueless in endocrine system.

Thank you its ridiculous that im a health professional and still wont be taken seriously. NICE guidelines seem to be ignored

Are you a hospital nurse?

If so you'll know lots of consultants there.

Can you zero in on an easy going one who can give you private prescription?

That if you don't want to wait for endocrinologist appointment. Bear in mind if you start taking Levo now there may be chance NHS endo won't pick up diagnosis due to corrected thyroid levels.

Otherwise you'll need to wait for endo appointment.

It's really up to you what you want to do and how much you're desperate.

shaws
shawsAdministrator

As you were already on levothyroxine for eight years and then an obstetrician decided you were not hypothyroid and you didn't get prescribed any more.

I think I would be apt to source my own levothyroxine - you know your own body and the symptoms you are having. It is strange - doctor willing to prescribe anti-depressants rather than check your Free T3. It is T3 which is the active hormone and needed in all of our millions of T3 receptor cells and brain/heart need the most to function optimally.

Put up a new post asking for a private message to be sent giving information of where to source levothyroxine - that is if you wish to follow this route. Your post will then be closed for info on the forum but you will get private message.

Zephyrbear
Zephyrbear
in reply to shaws

Wearing my cynical hat here, but don't doctors get a financial incentive for prescribing anti-depressants?

shaws
shawsAdministrator
in reply to Zephyrbear

I don't know the answer to that but it could be true.

Furface
Furface
in reply to Zephyrbear

I heard this also but let's face it, prescribing anti depressants is out of order instead of dealing with the problem. In my opinion, it's laziness and unfortunately this is a common problem. I have read about them being given out readily. Of course it's their word against yours. 'You must be depressed, here take these' . . . . Happened to me for many years with several doctors. It's laziness. What's in it for you? If you have thyroid problems, anti depressants block some of the very nutrients that your thyroid needs to function! Meanwhile, it gets rid of you and they may or may not get a little incentive.

I’m sure you’ve tried this with your GP but perhaps you could suggest a “trial” of levo before going the antidepressant route... I’m not suggesting you need antidepressants but trying to think of another way to get levo.

I so hope you don’t have to wait too long. X

Hi DD. You sound similar to my story as I hovered around tsh 5 for years undiagnosed, and fatigue and anxiety awful for 17 yrs, offered antidepressants,, I've discovered I was a five in 1997 and of course the thyroid hormones mixing with meno ones can cause real havoc for some! As it is with post natal depression for some also, as in pregnancy the different hormones again are rampant

To give a bit of heart when I found this wonderful site i set about improving my vitamins much needed, and healing gut, fundamentally important for all and wellness , the improvement has been slow, expect this is because I had it so long and the body has to adapt slowly (and mindset, I was desperate at one point as the doctors made me feel like I was fruitcake,,,,,, ). Also have read about affects of adrenal insufficiency (after years of ongoing stress anyway ) and have taken adrenal support, this I would say has given me energy back, slowly, work in progress, still taking some levo and vits, healing gut again as this slipped back, also gut flora, so has been a lesson to me but you do get better please know, I've read a lot now to understand it as the gps aren't trained in all the workings of it, (many of us it seems have 'leaky gut' the lining has minute pin holes and vitamins and matter can escape, and your health can really suffered generally , some go on to,have cealiac etc I believe )

I have bought t3 but not taken it as yet.

I've bought natural progesterone cream with one percent ostregen

In it as I had the sex hormones tested at Medichecks and was just below range. hope you find an informed endo,

For some of us I do feel it's not all on just one factor alone, holistically it's the whole thing working together for wellness

Hope ok to have a little ramble here. I k low it's a lot to take on board but doable , must be great to just take levo and feel great again, as it appears for some

Lots of good wishes. xxx

DO APOLOGISE. I'm replying on wrong Post

SO SORRY just ignore x. (If was yesterday I would be blaming fri 13th 🙃

Hi,

I self referred to an endo in London in the end who was happy to prescribe based on symptoms, rather than blood results. I do have high TPO antibodies though.

I can pm you with the details if it would help. An NHS endo was no help.

thank you

I think this is the most utterly ridiculous post content I've read since I've been on this forum! What on earth are they playing at???! Sorry, I know my outburst doesn't help you, but argggggh!

Usually once you're on replacement thyroid hormones you're on them for life. Why did your obs take you off them, and why was an obs taking responsibility for that decision anyway?

Is it worth approaching your practice manager? Or Pals? But even that takes time.

It can be difficult for doctors to see the whole picture, especially in the short time allowed for a GP consultation and it's quite possible that the dominant clinical impression was that you are depressed, a common feature of underactive thyroid. But it's a long (and good) tradition in medicine, that "everybody is entitled to a second opinion", so if your GP does not seem to be willing to give you thyroid replacement treatment with a seriously raised TSH and typical hypothyroid symptoms, the simplest option is to see a different GP in your practice, or failing that move to a different practice.

It's tempting but not really advisable to "go outside the system" as thyroid treatment may interact with any other meds you are prescribed.

Hi. Just read your post. I know that very tired feeling after trying your hardest with work. I was like that then I had my cortisol checked. I was very low and admitted to hospital. Request that your cortisol is checked also please. Look up the low cortisol symptoms and see if you have any.

Thanks

Pam

Furface
Furface
in reply to McPammy

In my case the cortisol test was described as fine. I had a 4 part saliva test done privately and it was almost flatlining. NHS Dr and Endo disregarded it as it wasn't their test. Didn't help me, just threw me to the lions. No help. Had to go to functional Dr who got me on the right track. Why? Because he had the knowledge and genuinely cares about his patients. I am still alive and working on vitamins, adrenals, sex hormones, intestinal parasites etc so feel confident of improving even more with time. Have been told it will take 2 years to get on top of things after being so depleted. That's better than just being given up on and discarded.

McPammy
McPammy
in reply to Furface

I was going to try the saliva test. But maybe not if they just throw it out. You are only trying to help them to help you. I’m struggling each day. I can only potter about my home and garden. So glad the sun is shining even though I can’t sit in it. Better than wind and rain. I read only yesterday that this can take 1-2 years to recover. Treat yourself well. Eat healthy, avoid stress, although bring in this is stress in itself. And only do what you have to. Watch comedy you enjoy to lift you if possible. I’m sure you’ve thought or doing this already. This is what I try to do. My heartbreak is nit being at work. I love my job and I do not get paid is off sick as I’m a contractor. Great while working but when off sick it’s s nightmare.

Best of luck. Let me know how your going.

Take care

Pam xx

Furface
Furface
in reply to McPammy

It is a combination of arrogance, inadequate knowledge, lack of compassion and a rigid adherence to NHS guidelines despite the patient being desperately ill. They do not care if you just crawl away and die. They even try to take my meds away to help the process. I don't trust them now and I can honestly say I have had a whole catalogue of incompetence, outright lies and omissions from Endos to my GP about me and the state of my thyroid / adrenals.

So now I will only listen if someone listens to me and earns my respect by at least answering my questions instead of blanking and pretending. The saliva test does reveal the whole picture of the state of adrenals rather than the NHS snapshot test so it is well worth it as you can still do something about it before its dire.

Problem with avoiding stress is that sometimes it finds you! Laughter, spending time with people you are comfortable with, clean diet etc all good but that devil stress bites you on the bum just when you are getting somewhere. xx

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