Sub-clinical hypthryoid, bring denied any help. - Thyroid UK

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Sub-clinical hypthryoid, bring denied any help.

ilovedoggos profile image
24 Replies

Hi all,

This is my third post on here! thought I'd keep you all updated! I requested an in person but was denined ad it wasn't seemed important enough. I told the doctor something isn't right with my thyroid results. I feel horrible and am being to feel like I'm going crazy or that I'm fine and it's all in my head. This is the second doctor I've spoken too. He said to look at natural remedies and there was nothing he could do. He said looking at my results I'll be be a hypo in the future. He needs to wait till my levels are lower/higher to do anything in a few years. I got a bit emotional and told him I can't continue feeling like this. I can't even get out of bed because of my fatigue and low blood pressure! other symptoms are depression, unexplained weight gain, coldness and dry skin. I can't afford to go private. I have no idea what to do, I'm from the UK and he said UK guidelines are stick and he won't just hand out medication to anyone. Here are my results for reference. I'm not sure what to do next. Thank you all for the support it's really ment the world over the last week!

TPO is 124 (normal range 0.00-5.60)

TSH is 7.14 (normal range 0.35-5.00)

T4 is 10.1 (normal range 9.00-22.00)

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ilovedoggos profile image
ilovedoggos
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24 Replies
Coop20 profile image
Coop20

This is so similar to me! I seem to have blood test results that fluctuate and therefore they won’t give me meds. I think they called my sub clinical at one point because my test results seem to go up then be borderline then back up. The U.K. system is rubbish, if we were in the US we would be on treatment.

ilovedoggos profile image
ilovedoggos in reply toCoop20

thank you for sharing! it really is!

Travelling922 profile image
Travelling922 in reply toCoop20

I'm having the same problem! Its awful isn't it. TSH is going up every time they test but no treatment. Mine was was 4.5 in Jan when i first felt unwell and 6.7 last week. Had more bloods done today...

greygoose profile image
greygoose

Buy your doctor a dictionary! He doesn't know the meaning of 'subclinical' and he doesn't know what 'guidelines' are. How can 'guidelines' be strict? Rules are strict, but 'guidelines' aren't rules, they are suggestions. But, at all times, the doctor is free to use his discretion. Did you send him that link I gave you?

And, for the record, 'subclinical' means positive according to the blood tests, but without symptoms. You are most definitely positive for hypo/Hashi's according to the blood tests, and you do have symptoms. So, you don't qualify for 'subclinical', you are overt hypo. You are hypo when your TSH reaches 3, and in some countries you would be treated at that level. NHS doctors are a bunch of sadists who like to leave the patient to suffer until their TSH reaches 10, and make up stories and their own vocabulary, to justify that sadism. If I were you, I'd self-treat. But, of course, it's always better to get a diagnosis first. Is there no-one else you can see? Someone who isn't a psychopath?

He said to look at natural remedies

Did he give you any clues as to what these 'natural remedies' might be? I'd press him on that point, if I were you, squeeze him like a lemon until he admits there are no 'natural remedies'! There are no remedies full stop. All you can do is take thyroid hormone replacement to relieve the symptoms and - incidentally - stay alive! I think you're being too nice to this man. They take advantage of nice people. He'd be mincemeat by now if it were me. Makes me so cross!

ilovedoggos profile image
ilovedoggos in reply togreygoose

I actually had the helpful links from the forum, printed them and was bringing my sister, I got this phone call without any notice this morning and he wouldn't even let me talk. I asked him and he just said 'look around from natural remedies' I was pretty much forced out of the phone call. my sister is writing up a complaint to the practice manager. I'm getting real down about it! both doctors have told me I'm fine and need to wait a few years! I don't have another surgery near me:( the only other one we have has given my mum the same treatment about this!

if it wants for this forum and my sister i would have given up, thank you so much, I'll have to wait till the practice opens and request our female doctor who is new, hopefully she will understand! thank you so so so much

greygoose profile image
greygoose in reply toilovedoggos

I'm so glad to hear that your sister is writing a complaint about this awful man! Probably something else is should look up in a dictionary is 'bedside manner'! He obviously doesn't know what that is. And, he obviously knows nothing about thyroid, anyway, so he'd never be able to make you well.

Full marks to your sister, she sounds great. Hope you manage to get an appointment with the new doctor, and that all works out well. :)

m7-cola profile image
m7-cola in reply togreygoose

I agree. GG is quite right. I’m afraid seeing most doctors, especially for thyroid illness, is a juggling act.

They prefer to ‘treat the tests, not the patient’. I suppose this protocol helps them to stay inside the system and keep their jobs.

greygoose profile image
greygoose in reply tom7-cola

Well, that might be what they believe, but I think that very often they just have a prejudice against thyroid patients. That's how it seems to me, anyway.

m7-cola profile image
m7-cola in reply togreygoose

Yes. I don’t suppose it helps that the majority of us are female and often older. There’s a bias in the medical world against women. It’s horrifying that even now most medical trials are based on the male body!

greygoose profile image
greygoose in reply tom7-cola

It is indeed. :(

SlowDragon profile image
SlowDragonAdministrator

Have you emailed Dionne at Thyroid Uk for list of recommend thyroid specialist endocrinologists

If your GP continues to ignore guidelines on starting levothyroxine you will need to go over their head and see endocrinologist privately

Meanwhile concentrate on improving vitamins and getting coeliac blood test online before trying strictly gluten free diet

ilovedoggos profile image
ilovedoggos in reply toSlowDragon

yes I have! all the thyroid specialists are private unfortunately and I can't afford to pay for private care :(

that's fantastic advice! thank you so much! the support means so much! I'd be lost with you all! :)

SlowDragon profile image
SlowDragonAdministrator in reply toilovedoggos

Make sure to get next thyroid blood test as early as possible in morning before eating or drinking anything other than water

This gives highest TSH

Getting all four vitamins optimal can also help raise TSH so you can start treatment

You may need to get FULL Thyroid and vitamin testing privately in 8-10 weeks

Often on offer at £79

SlowDragon profile image
SlowDragonAdministrator in reply toilovedoggos

Tick list of symptoms

Handy to take along to consultation

thyroiduk.org/wp-content/up...

Coop20 profile image
Coop20

My tsh is often high or borderline with my t4 and t3 being low it’s just weird that doctors won’t do anything. The only response i get is “let’s test you again in 3 months” which i understand but then it’s another 3 months and the same happens again or I’m borderline then it’s another 3 months!

tattybogle profile image
tattybogle

What's the difference between God and a Doctor ?

God doesn't think he's a Doctor.

Dont let the Bastards Grind You Down !

He probably doesn't like the idea of the cost's of treating you with levo for life because you're so young, so he's trying to put it off for as long as he can.

But Levo is one of the cheapest drug's around , and your quality of life is worth more than that.

With those antibodies and that TSH/FT4 , if you are not already properly Hypo , then i'm a monkey's uncle , whatever his NHS guidelines say.

Except that by not offering you a trial of Levo with 2x over-range TSH and symptoms and raised TPOab's , he's already not following his own bloody guidelines anyway.

'Helvella' posted a part of the guidelines that says that they don't have to follow the guidelines anyway , they have to decide what's right for the patient. I will try and find it for you.

By the way . check the range you have put for TPOab's ....... it doesn't seem like the usual range , is it a typo?

I have forgotten, is this your second over-range TSH ? if not they should give you another within 3 months to check. Make sure your next is 8/9am and just water before test.

Glad you've got your sister to help you, it's too easy to feel like it's in your head when you are on your own dealing with them.

I wish we could send GreyGoose to your appointment's with you........ she'd eat him for breakfast , and i'd pay to watch.

Good idea to try the female GP, fingers crossed she's better. ....... she can't possibly be worse!

Hope it's not too long a wait.

Sending you a ((((hug)))

Tat

x

Ps sorry for the swearing , but your GP is making me cross. I remember how much i was struggling with a TSH of 6.8 and mid range T4.

SlowDragon profile image
SlowDragonAdministrator in reply totattybogle

Love the opening lines 😁😁😁

tattybogle profile image
tattybogle in reply toSlowDragon

I must confess to plagiarism , i found it on an old post here :)

Redlester profile image
Redlester in reply totattybogle

doesn't matter - you can't repeat it often enough!!!

ilovedoggos profile image
ilovedoggos in reply totattybogle

that post has given me the boost I needed today! thank you! I double checked and those are the numbers on the blood sheet! do all correct!

I've had this test done a few times in my life and it's always been abnormal but subclincal - I actually stop eating at 5pm and only water till the test! the last one I had done was at 8.45 :)

it's crazy they just tell me to deal with it! does anyone know the NHS ranges to be diagnosed as hypo? Thank you so much! this morning I nearly gave up and was thinking it's not worth it!

bit of a side note, but do you know of any symptoms of bloating or swelling? I look pregnant at the moment! my face is also very puffy! I'm only having two meals a day! 1500 calories!

so sorry to ask so many things! thank you so so so much 💖💖💖💖💖

tattybogle profile image
tattybogle in reply toilovedoggos

hi again, i have copied a reply that helvella sent to me once :

GP said "i,m not going to argue with you , i have to go by NHS guidelines".

See, and show your doctor, page 2 of:

Thyroid disease: assessment and management

NICE guideline

Published: 20 November 2019

PAGE 2

YOUR RESPONSIBILITY

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. *****It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.***** :)

nice.org.uk/guidance/ng145/...

All the rest of the latest guidelines about treating subclinical hypo, and every thing else are in here too.

PAGE 13.

TREATING SUBCLINICAL HYPOTHYROIDISM

1.5.4 Consider a 6-month trial of levothyroxine for adults under 65 with subclinical

hypothyroidism who have:

• a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions

3 months apart, and

• symptoms of hypothyroidism.

If symptoms do not improve after starting levothyroxine, re-measure TSH and if the

level remains raised, adjust the dose. If symptoms persist when serum TSH is within

the reference range, consider stopping levothyroxine and follow the recommendations

on monitoring untreated subclinical hypothyroidism and monitoring after stopping

treatment.

PS........ PUFFY FACE = classic hypothyroid sign

SlowDragon profile image
SlowDragonAdministrator in reply toilovedoggos

Any reasonable GP could start treatment now

Bloating and acid reflux are common hypothyroid symptoms

Thousands of posts on here about Low stomach acid

healthunlocked.com/search/p...

ilovedoggos profile image
ilovedoggos in reply toSlowDragon

wow okay thank you tatty and Slow! I started having acid reflux a couple weeks ago, I've never had before and thought it was completely unrelated! I'm printing those off and preparing a file, at the very very least another blood test in 3 months not 6! the last test before my most recent one was 2 years ago because I gave up! you guys are actual angels! it has way more complication and implications than I ever thought! I've always been told it will sort itself out! gosh! -_- you're both amazing thank you!

Muffy profile image
Muffy

What time of day did you have your blood drawn? The TSH is higher first thing , so a blood test between 8 and 9 am is best .

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