Failure at the drs: So after seeing the dr today... - Thyroid UK

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Failure at the drs

Rosie2m profile image
93 Replies

So after seeing the dr today she has told me that her hands are tied and she cannot increase my levo dose as my level is now ‘in range’ when I questioned if she could put it up to 75mcg from 50mcg as she herself couldn’t understand why I’d been started at 50mcg she said she couldn’t increase it because she has no evidence to back the increase as ‘tsh’ is now in range. She did seem very knowledgeable about thyroid and all tests excetra but said I couldn’t have another blood test for 3 months and all the time my level is in range whether I feel well or not I won’t get an increase 😩 she said as I had my blood test after only 2 months my thyroid could still be improving and that I could still see improvements yet 🤷‍♀️ who knows! Xx

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Rosie2m
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93 Replies
greygoose profile image
greygoose

Well, I don't know the guidelines by heart, but that sounds like so much hogwash to me. Where in the range is the TSH? She shouldn't be dosing by the TSH, anyway. I don't think she does know much about the thyroid, and doesn't know the guidelines, either! Hopefully someone will come along that does know them.

PS I question her knowledge of English, too. Guidelines are just that: there to guide you. They are not rules and regulations, and doctors are still allowed to use their discretion.

Rosie2m profile image
Rosie2m in reply to greygoose

Tsh is 3.30 (range is 0.35-5) I also am under the same understanding as you that drs can use their discretion but she wasn’t prepared to even entertain the idea . Will see how my bloods are in 3months I guess 😩 x

greygoose profile image
greygoose in reply to Rosie2m

Well, that TSH says that you are still hypo - hypothyroidism starts at TSH 3. So, she really does not know that much about thyroid. And, as I said, she shouldn't be dosing by the TSH, anyway. 3 months is much too long for a retest. It should be 6 to 8 weeks. But, in your case, there's really not much point anyway on just 50 mcg. Very doubtful if your results would improve - and could even get worse. I think she's just fobbing you off because she can't be bothered. Can you see someone else?

Rosie2m profile image
Rosie2m in reply to greygoose

Greygoose the issue I have is this is the 2nd dr I’m seeing as the 1st one was even worse 😩 I don’t hold out much hope for the drs at my surgery anymore xx

greygoose profile image
greygoose in reply to Rosie2m

Not possible to change surgeries?

Rosie2m profile image
Rosie2m in reply to greygoose

I could but my whole family are at the surgery and from what I hear the surrounding surgery’s aren’t any better 😩 I fear the grass won’t be any greener xx

greygoose profile image
greygoose in reply to Rosie2m

Yes, I see what you mean. So, the only solution left is self-treating.

Rosie2m profile image
Rosie2m in reply to greygoose

It’s certainly starting to feel that way 😔 xx

Angel_of_the_North profile image
Angel_of_the_North in reply to Rosie2m

Well, NHS guidelines say that TSH should be under 2 when treated with levo, so she's talking rubbish. Can you see a different GP?

Rosie2m profile image
Rosie2m in reply to Angel_of_the_North

I could bit this is already the 2nd dr and I’m losing faith in the surgery as a whole. I’ll probably end up with a black mark against my name lol xx

m7-cola profile image
m7-cola in reply to greygoose

I totally agree with you GG.

fuchsia-pink profile image
fuchsia-pink

Can you give the actual blood result and ranges please? - generally you will find that once you are on medication, you feel better if you are at the lower end of the range (or even below it). TSH is quite a blunt instrument. You may well still be in range on 75 mcg anyway!

Rosie2m profile image
Rosie2m in reply to fuchsia-pink

Hi, if you look back a few posts of mine I have uploaded a photo of most recent results. Xx

Lora7again profile image
Lora7again

So she is leaving you on a starter dose? I would change your Doctor because they clearly have no idea how to treat you. My elderly Dad who is 78 (he doesn't look 78 but he is) is on 100mcg and that suits him. How old are you?

Rosie2m profile image
Rosie2m in reply to Lora7again

Yes, she won’t change it even if I’m still symptomatic, she said I will have to treat joint pain excetra with pain killers as her hands are tied because my tsh is in range. I’m 33 x

Lora7again profile image
Lora7again in reply to Rosie2m

You need to either find another Doctor or self treat like a lot of us have had to do because the NHS will not help us. This is why this site exists because we cannot get Doctors to treat us. Read my story on my profile page .... I wish I could say I have found a Doctor to help me but I haven't .....

Rosie2m profile image
Rosie2m in reply to Lora7again

Well apparently this dr is only covering another drs maty leave so i May just wait until such a point when she returns as my colleague has had a good thyroid experience with her before she went. I can only hope tho! Xx

Lora7again profile image
Lora7again in reply to Rosie2m

I would not wait if I was you

shaws profile image
shawsAdministrator

For goodness sake!!!! Why are doctors so poorly trained re anything to do with a dysfunctional thyroid gland which means their patients suffer from inept training of doctors. The aim is for the patient to feel well again.

The aim, once we're diagnosed as hypothyroid. is to get the TSH to 1 or lower (not 'somewhere in the range - which is up to 10)and a Free T4 and Free T3 in the upper part of the ranges. T4 is inactive and has to convert to T3. T3 is the Active thyroid hormone and is required in the millions of T3 receptor cells in our bodies.

Hints:-

Always get the earliest possible appointment for blood tests. It is a fasting test (you can drink water) and allow a gap of 24 hours between your last dose of levo and the test and take it afterwards.

Always get a print-out of your results and ensure ranges are also included. Ask also for B12, Vit D, iron, ferritin and folate to be checked too. Everything has to be optimal.

Newly diagnosed patients have to have a blood test every six weeks until TSH if 1 or lower (not somewhere in range). Free T4 and Free T3 should be in the upper part of the ranges (rarely tested).

Lora7again profile image
Lora7again in reply to shaws

Ditto!

Rosie2m profile image
Rosie2m in reply to shaws

Hey Shaws, I did follow all advice for most recent blood test (it’s uploaded on a previous post of mine) dr has refused another blood test for 3 months. Dr said they will only do t3/t4 if there are unusual things happening so they won’t do that and even said that a lot of my symptoms could be depression 🙄 tbf she is the better one of the drs I’ve seen there after my previous dr being completely useless! Even if I’m symptomatic she will not increase levo as I’m ‘in range’ 🙄 x

Aslangal profile image
Aslangal in reply to Rosie2m

Rosie ... did you go privately for your tests? Or GP did them? Go privately. I used Medichecks and it showed my thyroid antibodies were through the roof and I was seriously Vit D deficient. Even WITH those private tests, I still have to be proactive with my GP.

Rosie2m profile image
Rosie2m in reply to Aslangal

My gp did them but I followed all test advice on here first. I do have a thriva test here which I plan to use in about 5/6 weeks to see how the levels are going as gp won’t test for 3months now! X

shaws profile image
shawsAdministrator in reply to Rosie2m

The most important, as I think you know, is the FT4 and FT3 that will inform you whether or not your's are in the upper part of the range - as they need to be for us to feel well.

Rosie2m profile image
Rosie2m in reply to shaws

When I do the home test and get results I’ll post for all of your help Thankyou xxx

shaws profile image
shawsAdministrator in reply to Rosie2m

Just in case you aren't aware of the procedure to get the best results:-

1. The earliest blood draw (make sure you are well-hydrated a couple of days before.

2. Allow a gap of 24 hours from last dose of thyroid hormones and test and take afterwards.

Aslangal profile image
Aslangal in reply to shaws

Laughed out loud at your opening line ‘Oh for goodness sake!’ 😂😂😂 We were all thinking it lol 😀

ladytelita profile image
ladytelita in reply to shaws

Is there a peer reviewed paper that states all this? I have never even had my antibodies checked! My tsh is super low but so is my t3 so my poor gp hasn’t got a clue what is wrong or why. Their answer...wait three months and repeat the test to see if it has gotten better!!

Nanaedake profile image
Nanaedake

I would return and say you have symptoms and take a list. Then insist if Doc thinks symptoms are not thyroid related that they run full blood tests to explore further. The point of thyroid hormone is to be symptom free as it's replacing what is missing. So logic dictates that if you are optimally replaced and still have symptoms then something else is wrong and needs exploring. Thyroid hormone takes 6 to 8 weeks to reach all cells and give a reliable reading so you are unlikely to see any further improve t in TSH level.

Rosie2m profile image
Rosie2m in reply to Nanaedake

She basically said that everything wrong with me could link to depression too so I should be aware that it could be that 🙄 I’ve given up with them now and I’ve only had a diagnosis since November which in itself was a nightmare getting treated. I genuinely think they are just treating the numbers and couldn’t really care less about my well being. I won’t be retested for 3 months now so just have to see what it is then I suppose. X

Lora7again profile image
Lora7again in reply to Rosie2m

Those symptoms and results are not depression it is because your thyroid is failing and you need Levothyroxine or NDT. You now need to take your own health into your own hands because I went years of being bedridden and ill because my GP said he could do nothing to help me because of NHS guidelines. I wish I had done something sooner because my family have suffered because of my ill health. I have wasted so many years.

Rosie2m profile image
Rosie2m in reply to Lora7again

Thanks Lora, I’ve read your profile it seems you’ve had a rough ride 😔 I will definitely have to look into I think, sounds like a tricky business tho lol xx

Nanaedake profile image
Nanaedake in reply to Rosie2m

Well, you don't have to accept the doctors opinion but you will have to be persistent to get further action. If you back down then you are basically accepting the doctors opinion. If you sincerely believe you are not depressed then I would pursue it as I've suggested above but be prepared to be firm and insistent.

Doctors see a lot of patients with vague symptoms and they don't have time to deal with it. However, its possible that you do have another coexisting condition that needs to be diagnosed and treated so you might want to insist that is ruled out. If nothing is found then it confirms that your thyroid hormone is not optimal. I'm afraid you're going to have to be brave and assertive to sort this out. Might be best to take someone else with you to the next appointment. Doc can test other bloods even if they can't redo thyroid ones.

Rosie2m profile image
Rosie2m in reply to Nanaedake

Thankyou, you are right. I do need to be assertive. I think the issue is the drs are either really rude and abrupt or really nice and I find myself smiling out of the office without actually putting my point across 😩 I will endeavour to get to the bottom of it, thankyou xx

Nanaedake profile image
Nanaedake in reply to Rosie2m

Well, I think telling someone they are depressed is a device to undermine their confidence in their own judgement. Doctors should make evidence based diagnosis. On what evidence did your doctor say you were depressed? I don't thi k doctors are qualified anyway to make that judgement, it's simply an unsubstantiated opinion. So, muster all your confidence for your next apt and don't be deflected by opinions that are not based on evidence.

I'm sure you'll get your points across next time. Come back and let us know how you got on.

Rosie2m profile image
Rosie2m in reply to Nanaedake

I even said to her that I don’t feel depressed, she said that lack of concentration, extreme tiredness, and unpredictable moods can all be signs of depression and not all depression is the same so even though I don’t feel suicidal or crying that doesn’t mean I’m not depressed 🙄 x

Nanaedake profile image
Nanaedake in reply to Rosie2m

Grrrrrr, how would she feel if she was undermedicated?

Rosie2m profile image
Rosie2m in reply to Nanaedake

God knows but she probably would be dosing herself up as much as she could til she felt better... not an option that we all have unfortunately 😔 xx

Angel_of_the_North profile image
Angel_of_the_North in reply to Rosie2m

And the practice gets extra funding points if they prescribe antidepressants ...

Rosie2m profile image
Rosie2m in reply to Angel_of_the_North

Yep, I refused those point blank so she probably now thinks I’m in denial too 😂😂 xx

Angel_of_the_North profile image
Angel_of_the_North in reply to Rosie2m

You could accept prescription, throw pills in bin and go back to say they make you feel worse. I'd report her to PALS and practice manager for not following NHS guidelines on thyroid treatment (because I'm a nasty bitch). Also look up the tests for depression online (forget the names) so that you can make sure that you give the "correct" answers if you have to do them. Basically they are rigged so that every adult who isn't manic would have "mild depression".

Rosie2m profile image
Rosie2m in reply to Angel_of_the_North

Ah that is a good idea, thankyou! I shall ensure that I pass the depression test should I have to do it! Practice manager complaint is going to be my next option I think if I don’t get anywhere, apparently I have to do it by email so plenty of room to attach documentation! Xx

greygoose profile image
greygoose in reply to Rosie2m

Good lord! She's got an answer for everything! Pity she doesn't spend more time learning about thyroid, rather than spending it finding ways to fob patients off so that she doesn't have to do her job!

greygoose profile image
greygoose in reply to Rosie2m

I genuinely think they are just treating the numbers

That would be alright if a) they had all the right numbers and b) knew how to interpret them. But they don't, and they don't. So, that's where the problem lies.

Tell your doctor that depression is a symptom, not a disease!

Aslangal profile image
Aslangal in reply to Rosie2m

Tell her it’s mitochondria not hypochondria! Low or deficient Vit D and B12 can bring on depression symptoms. Seriously - this Dr is detrimental to your health. Someone more experienced than me could give you step by step instructions on what you could do even if by direct message. So sorry this is what your treatment plan is from your GP. Hang in there 😉

Rosie2m profile image
Rosie2m in reply to Aslangal

Thanks lynn, I’ve had lots of help in previous posts and this post and am so grateful for all the help people have given me. It’s so frustrating because when I’m at home I get all pumped up to argue the hell out of what they say but then when I get there I’m like a little nodding dog! I get so infuriated with myself that I let the drs steamroll me and I accept it all with a smile on my face 😡 x

Aslangal profile image
Aslangal in reply to Rosie2m

The average GP has 10 mins with you or at my surgery you can make a 20 min appt. Get a notebook and write down all the advice. Then make a list of bullet points you want to say to the Dr. Type it up and make it official if you want and it can go on your file. And as everyone says - take someone with you for support. Hope to hear you get somewhere. Good luck 😉

Rosie2m profile image
Rosie2m in reply to Aslangal

I have taken lists with me each time I’ve been and never get to address everything, when I took a printout of symptoms from thyroid uk site whilst I was pushing for thyroid treatment the doctor literally wouldn’t even look at it properly. I was also told last time that we only have 15minutes and I have to write up your notes in that time’ 😡 x

Aslangal profile image
Aslangal in reply to Rosie2m

😡😡😡

shaws profile image
shawsAdministrator in reply to Rosie2m

Inform your GP, if she does think you are suffering from 'depression' that you need a Free T4 and Free T3 blood test. A low FT3 in particular would mean our body is not functioning at an optimal level and depression, if hypo, needs both FT4 and FT3 in the upper part of the ranges. The latter two are rarely tested but you can get your own personal blood test and post results on a new page.

ncbi.nlm.nih.gov/pmc/articl...

Tick off your clinical symptoms which are probably due to not having sufficient T3 in your body. T4 is an inactive hormone and has to convert to T3. It is T3 which is needed in all of our T3 receptor cells for us to function as normal.

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

It's as if doctors' training consists of running an eye over a page about dysfunctions of the thyroid gland and then imagine they are experts. It's like someone who reads a complicated recipe, runs their eye over it then tries to remember all the ingredients but when they remove it from the oven it is only fit for the bin, not edible.

Rosie2m profile image
Rosie2m in reply to shaws

Thanks shaws, I do have a private test that I plan on using in the next 5/6 weeks. I will post results once I’ve done it 😀 I feel my dr will not listen to anything unless she sees it with her own eyes 🙄 xx

shaws profile image
shawsAdministrator in reply to Rosie2m

I just think the doctors are so poorly trained these days (in the past they knew all clinical symptoms) (before blood tests were introduced) and our symptoms were treated with NDT. That was all that was available before levo.

I'd take the info Jazzw has suggested re 'depression' as they mostly pick something out of thin air if they themselves don't know or understand any symptoms and most likely prescribe something other than some T3 which should make you feel better.

Rosie2m profile image
Rosie2m in reply to shaws

My dr doesn’t care about symptoms... I looked on my patient record today and the stuff she’s written on there is laughable....

‘Informed patient her ‘symptoms’ overlap with depression’

‘Informed patient she is expecting too much from herself and to be kind to herself’

‘Blood tests show NO abnormalities’

Basically making me sound like a hypochondriac .... wouldn’t mind but if she looked at my record prior to this starting and pregnancy I’ve only been about 3times in about 10years lol! Hardly somewhere I visit for fun 😡 xx

shaws profile image
shawsAdministrator in reply to Rosie2m

That's ridiculous but just goes to show how people may lose their livelihood as employers will believe the word of a GP, rather than us, the patient stating that what GP states isn't true.

Rosie2m profile image
Rosie2m in reply to shaws

Yes I agree, working in pharmacy I know all too well that gps aren’t god, unfortunately a lot of people still think of them in such a way and worship the ground they walk on! X

shaws profile image
shawsAdministrator in reply to Rosie2m

I've just looked at the following and 'depression' can be caused by hypothyroidism, so if she treated the hypothyroidism first - properly and adequately, then you wouldn't need 'tablets for depression'.

Tick off all of your symptoms on the following link and give to your GP.

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

"Home » Depression » Is Thyroid Dysfunction Driving Your Depression?

Is Thyroid Dysfunction Driving Your Depression?

By Margarita Tartakovsky, M.S.

Associate Editor

Last updated: 8 Jul 2018

~ 4 min read

Is Thyroid Dysfunction Driving Your Depression? Hypothyroidism — known as low thyroid — may cause depression. Hypothyroidism is a “condition in which the body does not get enough thyroid hormone for optimal brain and body functioning,” according to Gary S. Ross, M.D., in Depression & Your Thyroid: What You Need to Know.

Research has found a link between hypothyroidism and depression. For instance, there’s some evidence that people with depression tend to have higher rates of hypothyroidism than the general population (such as this study). A 2004 study found that 38 percent of older patients with hypothyroidism also reported symptoms of depression.

Unfortunately, hypothyroidism often goes undiagnosed. Some people simply aren’t tested for thyroid problems, while others are, but their lab tests come back “normal,” Dr. Ross notes.

The problem is that normal test results can be deceiving. Even individuals with subclinical hypothyroidism can have problems with mood and cognitive function. According to Ross, subclinical thyroid dysfunction shares many of its symptoms with clinical hypothyroidism.

Hypothyroidism and subclinical hypothyroidism appear to be more common in women with estimates of 2 percent and 7.5 percent, respectively. Anywhere from 5 to 15 percent of people with subclinical thyroid dysfunction may develop clinical hypothyroidism. (Ross believes these numbers are much higher.)

Research also suggests that people with subclinical hypothyroidism may be more prone to depression compared to people with normal thyroid functioning. (Here’s one study.)

Ross believes that all individuals with depression should be evaluated for thyroid problems. He writes:

There may be rare cases of depression that cannot benefit from thyroid treatment. Nevertheless, in every case of depression, it is optimal practice to test very thoroughly for thyroid dysfunction, much more thoroughly than is usually done in initial screening examinations. When the testing is thorough, then if anything is found in keeping with a low thyroid function, it is crucial to include some kind of thyroid treatment protocol in the overall treatment plan for maximum benefit to the patient

Rosie2m profile image
Rosie2m in reply to shaws

Fab, thankyou!!! I will do that! I totally forgot but she also told me that whilst I will read about ‘subclinical hypothyroidism’ it’s not actually a thing here and you either have it or you don’t.... bizarrely the rubbish dr I saw before her told me I was ‘technically subclinical because my tsh hadn’t reached 10...’ same surgery, same country yet one says it’s a thing and one says it isn’t. Can’t help but think they don’t know anything so just bluff their way through it!! Xx

shaws profile image
shawsAdministrator in reply to Rosie2m

They are so ignorant about clinical symptoms of hypo. That's because they belong to the 'blood tests alone' method they believe will be accurate. Not so.

Before blood tests (Big Pharma must now get millions of £££s or $$$s for these tests because when we were on NDT only - no blood tests were available) and it was all about our clinical symptoms and doctors giving a trial of NDT (natural dessicated thyroid hormones).

I think it is only the UK who plucked the Number 10 out of thin air and that we had to reach that before being diagnosed. In other countries if TSH is 3+ they get prescribed with symptoms.

Rosie2m profile image
Rosie2m in reply to shaws

She was just giving me off and my oh thinks I’m obsessed and that I need to delete this group as its making me worse 🙄 if ppl can’t see your illness you must be lying eh! Xxx

shaws profile image
shawsAdministrator in reply to Rosie2m

If I had to wait until my TSH was 100, before I diagnosed myself shows how untrained are doctors.

Two days before my own test, my doctor phoned to state I am pleased you don't have anything wrong with you. I had told him that 'something is seriously wrong with me that I need to get a 'whole body scan'.That was when TSH showed 99.5 (he obviously didn't realise this was 'over range' and coincided with my own blood test (I had phoned the surgery to leave a form out for me) so blood test dept must have been puzzled with two blood tests in two days, so they phoned the surgery and wondered why doctor had said 'no action required'. Another doctor phoned me because she wondered why I had had another test and I told her I got my own blood test form from surgery. Can you imagine the consternation of the blood dept, sending 99.5 TSH and no action being taken, and then getting another (which I did) was 100.

I think we could do a pantomine about all the runarounds many of us get.

Rosie2m profile image
Rosie2m in reply to shaws

Shaws that’s awful!!! You must’ve felt like absolute rubbish! Bet the dr felt a right Pratt xx

shaws profile image
shawsAdministrator in reply to Rosie2m

I was bedbound I couldn't get out of it, was far too ill. I cried when the other doctor phoned to enquire how I'd got another blood test.

Sometime, luck just follows you as it did to me as I could have gone into a coma.

Rosie2m profile image
Rosie2m in reply to shaws

Just read your profile, what an epic failing of the healthcare system. Glad you feel well now and are able to help others 😀 xx

Dodgi profile image
Dodgi in reply to shaws

Hi

I did know there was a connection between hypothyroidism and depression as when I start feeling really low my thyroid meds need checking. 3months ago I had my meds upped to 150 from 125 but dont feel any better at all. My depression has gone worse and I'm not in a great place. I have a blood test booked in 2 days. I also take 100mg sertraline a day.

I'm now wondering if the sertraline arent working with my levothyroxine tablets. ?

Any feedback on this would be appreciated.

Rosie2m profile image
Rosie2m in reply to Dodgi

Hi dodgi,

I wish I could help but I’m new to all this 😩

I honestly don’t feel depressed but I am under medicated and my dr is fobbing me off trying to say it’s depression. There is lots of help on here tho so may be worth making a thread and someone with more knowledge than me may be able to give some advice xxx

Dodgi profile image
Dodgi in reply to Rosie2m

Thanks rosie2m.

I actually did think I had replied to someone else who had posted 🤦‍♀️🤦‍♀️

There goes my brain fog. 🙄

shaws profile image
shawsAdministrator in reply to Dodgi

You may have to get a private blood test for Free T4 and Free T3 if doctor wont do so.

Both of these are important and rarely checked.

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

Dodgi profile image
Dodgi in reply to shaws

Thanks for that. I'm also going to see if I can get my last blood test results.

shaws profile image
shawsAdministrator in reply to Dodgi

The connection of depression with hypo is common and there are many more symptoms than any doctor seems to be aware of:-

Instead of making sure we have 'optimum' dose which means that both FT4 and FT3 are in the upper part of the ranges they will prescribe 'other' medications instead.

I doubt doctors know any symptoms at all and put all the reliance upon a TSH (from the pituitary gland) result.

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

shaws profile image
shawsAdministrator in reply to Dodgi

If sertraline doesn't seem to be working for you and considering that we can get other symptoms if not on an optimum dose of levothyroxine, your doctor should check Free T4 and Free T3 (very rarely tested) and both should be in the upper part of the ranges.

T4 is inactive and it should convert to sufficient T3 but if your dose isn't optimum you might not be converting to sufficient T3. T3 is the Active thyroid hormone and is needed in the millions of T3 receptor cells and heart and brain contain the most.

Dodgi profile image
Dodgi in reply to shaws

Thanks for your reply this site is so helpful and knowledgeable.

Many years ago my doctor put me on HRT tablets and I do tell many people I never felt better than when I was taking them. Then 6 months later another Doctor stopped them as there had been a scare of them causing I think cervical cancer. However few years later that was found not to be right.

Could the hormone replacement helped in any way with my under active thyroid for me to feel so well do you think or is that nonsense I'm thinking. When I do go back to doctors I am going to put that question to him.

shaws profile image
shawsAdministrator in reply to Dodgi

As I'm not medically qualified I cannot answer your question and I know many women find HRT helpful but it is not a thyroid hormone and the Active hormone is T3 (liothyronine) but they prescribe levothyroxine (T4) which has to convert to T3.

Hormone replacement therapy (or HRT) is the replacement of female sex hormones oestrogen and progesterone in women to control symptoms of the menopause.

Millions seem to do fine on levo but others cannot and I'm one amongst the many on this forum who also don't feel any better on it.

In the past we could be provided with 'options' but unfortunately these are no longer prescribed or banned from being prescribed.

As GP raises your doses - it has to be done gradually - you might find an improvement on each increase.

The aim is a TSH of 1 or lower and FT4 and FT3 in the upper part of the ranges. The latter two are rarely tested but many members get their own blood tests from on of the recommended labs.

The procedure is the same:-

Make sure body is well-hydrated a couple of days before. The earliest possible blood draw and allow a gap of 24 hours between last dose and test and take it afterwards.

This is what is required:-

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies (if antibodies haven't already been checked).

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

Dodgi profile image
Dodgi in reply to shaws

Thank you..I have never heard anything about my antibodies being checked ever. I am defo asking doctor for other blood tests when I go to see him. I will make a note of what I need to ask him.

Jazzw profile image
Jazzw

Her hands aren’t tied at all. She’s choosing not to increase your thyroid hormone replacement when there’s a clear clinical need for a raise in dose.

Please don’t let her tell you you’re depressed. She has no business doing that when you’re clearly hypothyroid and struggling with energy to do just the day to day necessities.

I’d see if I could see someone else if it was me. Sometimes easier said than done, I know, but this numpty will make you even more ill if she continues to refuse to treat you appropriately.

Rosie2m profile image
Rosie2m in reply to Jazzw

Thanks Jazzw I have spent the majority of yesterday and today questioning if I am actually depressed 🙄 I genuinely feel like bone pain, 1day periods and wobbliness aren’t signs of depression so how she got to that conclusion I’ll never know. I think I will look into seeing another dr but I fear they are all as useless as each other at my practice! Xx

Jazzw profile image
Jazzw in reply to Rosie2m

I seriously don’t understand why they’d rather throw antidepressants at someone instead of much needed thyroid hormone replacement increases but we see it happening here over and over again.

But medicine as a profession has been very much dumbed down, as have many professions it seems. No one’s allowed to think for themselves—it’s all guidelines for this and that. Paint by numbers. It must be enormously frustrating if you are a doctor who can see past it all but still fears the repercussions of going against the senior partner in the practice. But I fear that these days, anatomy and physiology just isn’t taught very well anyway, so it’s a double whammy of not knowing the right thing to do and not being able to do the right thing even if you do know better.

Rosie2m profile image
Rosie2m in reply to Jazzw

I totally agree, I genuinely feel that there’s so many repercussions if they make a mistake that it’s better to not step outside the ‘guidelines’ and risk them. Even if that means knowingly leaving patients suffering! Xx

MissGrace profile image
MissGrace

I’d run a mile from this doctor. She isn’t prepared to listen. You told her you don’t feel depressed, but she says your symptoms could be depression. You tell her that they relate to your thyroid but she refuses to acknowledge that. She isn’t knowledgeable about the thyroid at all and will continue to make you ill and keep you ill.

How convenient to label your symptoms as depression, for which there is no test rather than testing your T4 and T3. And to say her hands are tied when your TSH is still quite high is, frankly, a downright lie or such extreme ignorance she is dangerous. She’s refusing to prescribe more Levo, but I suspect she’ll be happy to hand out anti-depressants like smarties given half the chance. It’s makes me furious - the irony is raging hypo symptoms are enough to make anyone feel fed up and depressed!

‘She said as I had my blood test after only 2 months my thyroid could still be improving’ WTF does that mean? How is your thyroid going to improve? Improve in what possible way? Are you sure she’s qualified? Maybe you should double-check. Either way, run to the hills. 🤸🏿‍♀️🥛

Rosie2m profile image
Rosie2m in reply to MissGrace

Thankyou, your little emojis on the end have made me smile. Yes it’s ridiculous how happily they will give out antidepressants and yet getting levo is like getting blood out of a stone!! Xx

shaws profile image
shawsAdministrator in reply to Rosie2m

The majority of doctors are out of their depth treating patients who're hypothyroid. Let's get back to the days when doctors knew all symptoms and we got a trial of NDT (natural dessicated thyroid hormones).

I think it is absolutely disgraceful that 'false statements' were made about NDT by the BTF and despite a Rebuttal sent to them by one of Thyroiduk's Advisers, they never did respond to it (he was a scientist/researcher and expert in the use of T3). They refused to respond.

drlowe.com/thyroidscience/C...

Many people, due to NDT being made with animals' thyroid glands. recover on it and it is more conducive to the human body. Before blood tests, we were diagnosed upon our clinical symptoms (all doctors knew them) and given a trial of NDT (natural dessicated thyroid hormones). If they felt an improvement they stayed on it and it as gradually increased until patient felt well again.

McPammy profile image
McPammy

I think if you change your NHS Dr they will still say the same as you are within the NHS range, which is far too wide. As GG said you are hypo at TSH 3. 0. The best TSH figure to be at is around 1.0. I too struggled for many years with my GP. I did find out last year that I’m a poor converter of T4 to T3 by blood tests and the DIO2 gene test as positive.

My private only Endocrinologist informed me that the TSH should be below 2.5 and ideally at 1.00. Without T4 and T3 results you won’t know how you are converting or if you need Levothyroxine increase or introduce Liothyronine T3 medication.

If you can I think you should go to see a private only Endocrinologist. No point seeing a NHS/ private Endocrinologist as they are still wearing their NHS cap and won’t go against NHS guidelines which are set too wide. Too wide to keep people away from GP surgeries and hospital visits until the TSH gets to 10.00 when you will be suffering quite badly. My GP kept sending me away even though I was requesting thyroid blood tests, saying I had depression not a thyroid issue. Eventually they agreed to check my bloods and my TSH was 36 ( 0.35-5.50). I was in a really bad way. But even then it’s taken 11 years and go private only to finally be treated correctly with T3 medication.

If you do decide to go private only, please pm me and I will give you details of an excellent Endo in Oxford, who I was advised to see by an experienced administrator on here.

Don’t despair there is help. You just need to find the right Dr.

Rosie2m profile image
Rosie2m in reply to McPammy

Thankyou, I definitely feel this is a route I may have to take. I may see how my three monthly check goes... and how I feel as I know that this is not a cheap route to venture into. I will however do so if I feel I’m not getting the required help. It’s so frustrating 😔 xx

McPammy profile image
McPammy in reply to Rosie2m

Sorry you are being poorly treated by your GP. It cost me £600 in total including T3 medication to be properly diagnosed and sorted. Now I go the gym 3/4 times a week and feel a decade younger. Keep my details to pm me after your next routine appointment with your GP. Good luck. Oh and more importantly my GP and NHS Endo now prescribe me the correct medications.

Rosie2m profile image
Rosie2m in reply to McPammy

It’s a lot of money isn’t it but would be worth it if I can’t get treated properly by the nhs, I’ve got a thriva test that I’m going to use in about 6weeks and then I can gauge how I am doing... I’m also going to gather up as much amo as I can to take with me to the drs and take someone with me who won’t allow me to leave til I get some answers 😩 I’m glad you’re feeling a lot better, hopefully I’ll be the same as I’ve only been to the gym 6 times in 4 1/2 months and I was going 4-5 times a week 😔 xx

McPammy profile image
McPammy in reply to Rosie2m

For me it wasn’t too costly compared to how I was feeling in 2018. I had a full tome job. Next thing I knew I could barely walk and remained that way until the Professor in a Oxford diagnosed me and put me in the correct medication, for about 18 months. I hope you find your answers and get yourself sorted. It can be a debilitating disease for some. My GP openly admitted he knew hardly anything about thyroid conditions. Another GP said to me that I may as well be talking to a plumber as he had no clue how to try and help me. Sometimes GPs are honest and will refer you to find help.

Wetsuiter profile image
Wetsuiter

this is a long thread and i m gonna read it through to make sure ive understood, then hopefully I'll be back with a bit of the guidelines which i hope will help you. Hold on

Rosie2m profile image
Rosie2m in reply to Wetsuiter

Thankyou xx

Wetsuiter profile image
Wetsuiter

Right, i think this is mostly what i wanted to say;

I just realised that i dont know how much you weigh (obvs), but the section that might apply to you is 1.3.6

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

Below is a copy of a post i made when i used the new guidelines:

"Just finished a telephone appointment wherei pointed out that new dosing guidelines indicate i should be on 150 mc not 100. She askedme about the guidelines, so i read the relevant bit out. She mentioned the dangers of low TSH and over medicating. i pointed out my low T4 and T3. And that i haddeliberately made myself aware of the signs of overmedication. She finally asked how i wasfeeling. Rough.increase agreed!"

And finally, here is a copy of a some info recently posted by @fushia-pink who attended the Thyroid Trust conf on new NICE guidelines. The conference was led by Dr Kristien Boelaert ["KB"], based in Birmingham, who chaired the NICE guideline committee, who spoke at the meeting about whether they re guide lines or insnstructions.

"KB didn't seem to understand that what she intended to be guidelines, and interpreted generously in response to individual patients, are - in practice - treated as absolute rules."

so.

1 check your dose by weight as per the guidelines I linked

2 consider getting a private T3 & T4 test

3 if dr says hands are tied, point out what KB said at meeting

Actually no 1 could be CHANGE DOCTOR

Rosie2m profile image
Rosie2m in reply to Wetsuiter

Thankyou so much, I did check my weight against what the guidelines are and currently it comes out at 136 as I’m around 85kg atm due to weight gain 😩 I knew this info before but got sweet talked to the point that I felt bad for even thinking about trying to say it. So I haven’t really helped myself so far very well 😔 I’m going to use this post and other useful posts for my next appt and how armed like I had hoped to at this one but I’m not going to leave without a fight. Thankyou so much for taking the time to reply xxx

Wetsuiter profile image
Wetsuiter in reply to Rosie2m

it s not easy. i wrote a letter explaining that, due to the symptoms inc brain fog, i felt I hadnt been able to explain about how my quality of life was affected. Then I gave 3 pages of symptoms. It still took a couple of different Drs after that.

but it took me a step further down the road to (hopeful) recovery.

Aslangal profile image
Aslangal in reply to Wetsuiter

You know what @Wetsuiter, that is not a bad idea 💡 I think I will do just that in my own case.

Aslangal profile image
Aslangal

I’m thinking of changing my name to ‘OhMyGoodness!’ because I just keep saying it through this whole thread Rosie 😱🤓🤪 Oh. My. Goodness! You have been given appalling advice from your GP. Please consider the wealth of advice given and the experience behind it on here. We have to be our own advocates and we best know how we feel. 👊🏻

Rosie2m profile image
Rosie2m in reply to Aslangal

🤣 haha that made me laugh, I’ve thought of changing mine to a few things but more along the lines of ‘MyGPisS**t’ but I have refrained 😂😂 I have read all advice given and made notes in my phone of as many valid points that I can, it’s just finding the correct way to use them all xx

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