Speaking to GP tomorrow - which symptoms should... - Thyroid UK

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Speaking to GP tomorrow - which symptoms should I emphasise

KatyMac68 profile image
19 Replies

I think I am undermedicated with results:

Serum TSH level 2.41 mIU/L [0.27 - 4.2]

Serum free T4 level 16.7 pmol/L [12.0 - 22.0]

Especially as I forgot and took my 50 levothyroxine an hour before the test (numpty)

They are against me being on levothyroxine as I can't have any symptoms at that TSH

So these are some of my symptoms, which do I mention first? I also have fibromyalgia, chronic fatigue syndrome, ibs, hypermobility, menopauseal, food intolerances/allergies, and a prolapse/rectocele/bladder repair so being in pain/tired/brain fog is my life!

Dry gritty eyes

Puffy face

Dry mouth

Dry cough

Feels like I'm choking

Lump in my throat

My voice is often hoarse

Sores in my mouth/tongue

Itchy skin

Tired

Cold a lot of the time

Cold feet

I fall over a lot, tripping over my own feet or momentarily dizzy

My joint pain is high atm

Obviously we know my cholesterol & blood pressure is high (GP wants me to have statins & states I'll feel better on them)

Let's be honest I feel insecure and anxious about the appt, I think they think I am drug seeking or being a hyperchrondriac or something

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KatyMac68
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19 Replies
Buddy195 profile image
Buddy195Administrator

SlowDragon and tattybogle gave good advice/ links in your last post, so I would re read these.

TSH should always be under 2 and your FT4 is only 47% through the range, so (despite the blood draw error) this should be enough to push for an increase, alongside list of ongoing symptoms. I would take in the full list (as all may be linked to thyroid health), asking for an increase in Levo to see if this alleviates the symptoms and agree to a retest in 6-8 weeks. Also push for key thyroid vitamins to be checked (folate, ferritin, B12, vit D).

KatyMac68 profile image
KatyMac68 in reply toBuddy195

Thanks i am reading and rereading

I shouldn't be this scared of a conversation with so.eone who is supposed to be helping me

Buddy195 profile image
Buddy195Administrator in reply toKatyMac68

Unfortunately there are many GPs who are not knowledgeable about thyroid issues and ‘only’ look at TSH.

As I said before, do ask for key vitamins tests. In my case, low B12 and folate made mouth issues worse. If GP refuses, look to test these privately, as many members do.

DippyDame profile image
DippyDame

They are against me being on levothyroxine as I can't have any symptoms at that TSH...

Well for a start that is nonsense and clearly the opinion of an ill informed and arrogant medic. See another GP if that persists!

Symptoms are an important part of diagnosis. Undermedication can affect any, or all parts of the body. Tick off your symptoms on this list and give it to your GP

thyroiduk.org/signs-and-sym...

TSH is a pituitary, not a thyroid hormone it fluctuates throughout the day and reflects the combined levels of both FT4 and FT3....it does not reflect the individual levels and is not a reliable marker

Your TSH of 2.41 is too high, Taking your levo before your test has likely given you an FT4 which is a false high....this consequently shows a TSH that is a false low. In other words that test is not reliable!

The lower the hormone level the higher the TSH. When correctly medicated TSH should be 1 or under

Obviously we know my cholesterol & blood pressure is high (GP wants me to have statins & states I'll feel better on them)

Hypothyroidism raises cholesterol so correct medication is the solution....not statins! See symptom list above.

You will feel better on correct medication.....not on statins which just hide the cause!

Ideally you need a full thyroid test to include ....

TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies TPO and TG

FT3 is the most important result followed by FT4...but medics refuse to accept this and patients suffer

thyroidpatients.ca/2021/07/...

***********

bmcendocrdisord.biomedcentr...

Time for a reassessment of the treatment of hypothyroidism

John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann

You need to resolve your symptoms by treating the cause (hypothyroidism) not by picking out symptoms, of which there are many, and trying to treat them

Symptoms are the result of hypothyroidism.....not the cause!

It's a big subject which unfortunately medics are not properly trained to treat....that's why nearly 140,000 patients have arrived her desperate for advice.

Let's be honest I feel insecure and anxious about the appt, I think they think I am drug seeking or being a hyperchrondriac or something.

If your medics are viewing you like this then they should be looking for another job....you probably now know more than they do!!

Insist on another test....at 9am ( for highest TSH....they don't know this), at least an hour away from food and drinks except water and 24 hours after last dose of levo ( so that it settles in the serum first) Take your levo after the test.

The results will point to the way forward.

Please try not to feel insecure or anxious you should not be made to feel like that by an ignorant doctor....he's just another flawed human being not a higher mortal!!!

Take someone with you to the appointment and write a list of what you want to say and ask, that used to help me stay calm.

If they make you feel like that complain to the Practice Manager

Post the new results

We're all here to help....just ask

humanbean profile image
humanbean

If you want more information on symptoms this thread is worth reading :

healthunlocked.com/thyroidu...

For info on TSH levels in healthy people with no known thyroid disease you might find this helpful :

web.archive.org/web/2004060...

Notice that the graph doesn't go anywhere near a TSH of 10.

Sparklingsunshine profile image
Sparklingsunshine

Well that's a lot of crock for a start, cholesterol in itself doesnt cause symptoms, a medical consultant told me that, most people with high cholesterol and BP are blissfully unaware they have either as they rarely cause symptoms.

He's just trying to push statins and BP drugs because the surgery gets extra funding for these. Don't fall for his BS. The one thing that would help you feel a bit better is extra Levo but they dont get brownie points for that, so its not considered important. Plus being properly medicated would help with cholesterol and BP.

And lastly as someone with Ehlers Danlos who also has Fibro I'm very seriously coming round to the idea that actually widespread chronic pain, hypermobility and fatigue etc aren't all seperate entities but are actually all part of having hypermobility/ EDS.

EDS is a very poorly understood, very poorly treated condition, there are hardly any specialists in the UK. So we get told we're depressed, anxious, have Fibro blah blah blah, but if you look up EDS or joint hypermobility lo and behold these are all symptoms of having hypermobility.

Lack of collagen affects every muscle, tendon , organ, blood vessel as well as your skin, its a multi system condition, its not just bendiness. As I get older and more things are going wrong more and more symptoms and issues are pointing towards EDS being the cause. My latest is leaky heart valves caused by, yes you've guessed it, EDS.

KatyMac68 profile image
KatyMac68 in reply toSparklingsunshine

A retired GP suggest EDS on Saturday

I'm a bit mind blown by it all and so anxious 😟

I have really good/nice skin (EDS) & hair (Thyroid) so I don't fit either one entirely

Sparklingsunshine profile image
Sparklingsunshine in reply toKatyMac68

I have extremely good skin, very velvety and soft and I'm mid 50's. I find the issue with a multi system condition like EDS, thyroid, and so many others is doctors tend to treat the symptoms in isolation and not look at the whole, the joined up thinking is lacking.

So you've been told you have Fibro, CFS, yet these both share all the symptoms of EDS. I was told I had Fibro in 2008 and yet this was the time I also got told by the same Rheumatologist that I had EDS. Where was the joined up thinking?

These people are meant to be specialists. I dont think I've ever had Fibro and the mere fact not a single Fibro drug has ever helped me and I've not taken any for years just adds weight to this.

I always think medicine is rather like being a detective, you look at the clues, ie symptoms and put them together and arrive at a diagnosis. Often by a process of elimination.

But that requires you to look at all the symptoms and doctors are very fixated on blood tests and tend to ignore symptoms if blood tests are in range. What we need is a Sherlock Holmes but too many of us end up with Inspector Clouseau.

sparkly profile image
sparkly

Your last paragraph was me this morning at gp appointment, I get you.I came to ask are you on hrt?

KatyMac68 profile image
KatyMac68 in reply tosparkly

Yes, but possibly not enough!

sparkly profile image
sparkly in reply toKatyMac68

Yes likely your not. Are you on testosterone too? It wasn't until I was prescribed testosterone did all my joint aches and pains disappeare amongst a lot of other things. If your shbg isn't high then you are likely to respond very well to T. I've listened and read articles from ladies diagnosed with fibro who's symptoms disappeared once on T.Also if oestradiol is too low you could have anxiety, irritability, aching, overwhelmed etc..

That was me a few weeks ago after stupidly reducing my estrogel. Back on my 6 pumps and all good in that department.

It's a mine field when thyroid and sex hormones ate involved as you don't know what is causing what.

Definitely research Testosterone

KatyMac68 profile image
KatyMac68 in reply tosparkly

I am on testosterone

They put me on 75 evoral patches and 5mg norethisterone but the norethisterone at that level made my joints awful I only needed 1.5mg according to nice

I asked for 1 & a half everoal conti but apparently that isn't allowed so I had to go back to evoral conti

No-one looks at me as a person just the current symptoms

What's shbg please?

sparkly profile image
sparkly in reply toKatyMac68

Sex hormone binding globulin. It's usually tested at same time as testosterone bloods so can calculate your FAI. Sometimes thyroid medication can increase your shbg which in turn stops testosterone from working.Usually you have bloods tested at least yearly.

Nhs rangers are different depending where you live.

Testosterone was amazing for me.

KatyMac68 profile image
KatyMac68 in reply tosparkly

Serum sex hormone binding globulin level 24.2 nmol/L [27.1 - 128.0]; SHBG ref range (nmol/L):

20-49 yrs: 32.4-128

>50 yrs: 27.1-128

I reckon that's pretty low!

Except I started the levothyroxine after that blood test

I quite like the testosterone but it doesn't fix my joints, it helps a bit

The higher oestrogen would be good too but ....

sparkly profile image
sparkly in reply toKatyMac68

Glad your getting benefits from testosterone

The low shbg would have been an indicator that you were hypothyroid at the time.You do definitely need a increase in your thyroxine that's for sure.

Obsdian profile image
Obsdian

I try and recite the full list to any GP I speak to and they cut me off and say they get itm

KatyMac68 profile image
KatyMac68

Well they let me book a blood test for the 9th June

So I just need to remember not to take my tablets, after spending the next month remembering to take them!!

Thanks everyone - I have decided I don't have health anxiety I have speaking to doctors anxiety

sparkly profile image
sparkly in reply toKatyMac68

Oh dear, so not upped your thyroxine when you are obviously under medicated. So now you have another month of feeling dreadful. That's just criminal.I get you completely about doctor anxiety. I struggle getting my words out as I have memory/concentration issues and end up sounding like a bumbling idiot. Then forget half of what I wanted to say.

Makes you feel worse as they don't believe you feel dreadful and make you feel its all in your head.

KatyMac68 profile image
KatyMac68 in reply tosparkly

Yep it's all in my head or I'm getting more levothyroxine to sell on the black market

I feel so ineffectual - this is the woman who took on ofsted and won!

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