Docs appointment tomorrow need a little advice ... - Thyroid UK

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Docs appointment tomorrow need a little advice please

Justliloldme profile image
13 Replies

Got an appointment tomorrow with my doc to discuss my test results.

My Vit D is low, hormones ok & TSH 'in range'.

However, all my symptoms are pointing to hypo but with an 'in range' TSH of 3.4 (0.2 - 6.0) its doubtful she will prescribe anything.

I seem to remember reading on here that TSH should be below 1 & T£ & T$ near top of range for us to feel healthy/normal, and that if I were in another European country they would treat if TSH was over 3. Not sure if the actual figures are right here so I'm hoping someone can point me in the right direction of the evident of this.

My friend is a GP nurse & she said I need to go in armed with evidence that my symptoms are thyroid related and evidence of the optimum levels & how other countries treat hypo.

The doc did say last time I saw her (with my BH results where my TSH was above range) that she wouldn't medicate because T3 & 4 were in range which shows my thyroid was working & she didn't want me to go 'the other way'. However, I think I may have read on here that it was impossible for the hypo medication to make you hyper - or I may have misread this. Does anybody know anything about this?

Really sorry for all the questions but I really feel I would benefit from some meds and want to go with some facts.

As an aside my best friends husband has just been diagnosed & she & my husband were chatting & she was telling him (my husband) all about how he (her husband) was before he was diagnosed - apparently a nightmare to live with, grumpy, lethargic, constantly cold, snappy etc. To my horror my husband just sat there nodding & agreed that I was suffering in the same way. I honestly thought that only I could feel how this was effecting me - turns out the whole family have noticed!

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13 Replies

Can I just query your figure for the upper end of the TSH range, it seems rather high?

Justliloldme profile image
Justliloldme in reply to

Hi Cinnamon

I've double checked & its definitely 6.0

in reply to Justliloldme

Thanks for checking and presumably it was an NHS test? If you look at your BH results the top of the range is 4.2 so quite a difference.

grey has given you good advice!

greygoose profile image
greygoose

"I think I may have read on here that it was impossible for the hypo medication to make you hyper"

Depends on your definition of 'hyper'. When you are hypo, it means that your thyroid can no-longer make enough hormone to keep you well - you have low T3. Hyperthyroidism is the opposite. The gland is making too much hormone. You have high T3.

If the gland is sick, and not making enough, it cannot suddenly perk up and start making too much. That's physically impossible. So, you cannot, technically speaking, 'go hyper'. And, taking thyroid hormone replacement (levo, etc), does not have any effect on the gland itself, it doesn't make it suddenly start working better. All it does is replace the hormone that the gland can no-longer make.

One imagines that doctors know this, and therefore, when they talk about 'going the other way', what they actually mean is, becoming over-medicated. At least, one hopes they know, and that that is what they mean... However, where they are wrong is that they take the lowering of the TSH to mean you've 'gone the other way', when all it actually means is that you're taking thyroid hormone replacement. They do not understand that it doesn't matter how low the TSH goes, and a low TSH does not automatically equal 'hyper'. It's a combination of high FT3 and low TSH that means 'hyper' - or, in your case, over-medication.

Re her remarks about Frees in range meaning that your gland is working. Well, that's true, BUT, it's not just about it working, but how well it is working. And, if you Frees are at the bottom of the range, then it isn't working very well - not well enough to keep you well! Do you have the actual numbers for those Frees? With the ranges?

Justliloldme profile image
Justliloldme in reply to greygoose

Hi Greygoose

My own BH results in July were ...

Thyroid Function

TSH H 4.66 (Range0.27 - 4.20 IU/L)

T4 Total 100.5 (Range 64.5 - 142.0 nmol/L)

Free T4 16.22 (Range 12 - 22 pmol/)

Free T3 5.40 (Range 3.1 - 6.8 pmol/L)

The doctor said she'd do 'full' thyroid bloods - which turned out just to be TSH! My nurse friend said that you'll often find the labs won't run the T's if the TSH is in range. So not sure if lack of these bloods are due to the lab or the doctor.

in reply to Justliloldme

Were antibodies done?

Justliloldme profile image
Justliloldme in reply to

Yes, there were ok - I think

Anti-Thyroidperoxidase abs 6.4 (Range <34 kIU/L)

Anti-Thyroglobulin Abs 11.4 (Range <115 kU/L

greygoose profile image
greygoose in reply to Justliloldme

Combination of the two, I think, with the lab having the last word!

Your FT4 is under mid-range, so your thyroid isn't working that well, and needs a high TSH to push it. But your FT3 isn't too bad, because your conversion is good - which is good! But, that high TSH says there is a problem, and things will probably get worse.

SeasideSusie profile image
SeasideSusieRemembering

Justliloldme I can't add to Greygoose's excellent reply other than to say take your husband with you to your appointment tomorrow. If he can't go at such short notice then rearrange your appointment for when he can accompany you.

This is the way I was eventually tested over 40 years ago. Up and down to the doctors for two years, fobbed off with 'You're a young mum with 2 children, you can expect to be tired' despite the fact that my weight had ballooned and my husband used to drag me out of bed every morning, and leave me lying on the floor because I was too tired to get up, before he went to work. I completely lost it one day, he got the brunt of it, took me to the doctors and said 'Do something with her, I've had enough'. Only then did the doctor think to test my thyroid.

So please, ask your husband to go with you and back you up, tell the doctor how you are and how it is affecting you and him, it might just jolt your doctor into doing something.

Have you ever taken a list of symptoms to discuss with your GP? Print off this list from Thyroid UK, tick which apply and show your GP thyroiduk.org.uk/tuk/about_... , ask her to consider treating the person sitting in front of her father than a number on the computer screen.

Ask for a trial of thyroxine based on your BH results and if refused I'd be inclined to say something along the lines of "Well in that case I may have to consider self treating with the help and advice of one of the Thyroid charities because I can't live like this any longer".

I see you started supplementing your low B12 and folate mentioned after you posted your BH results but your folate is still low. What B Complex are you using? Does it contain methylfolate and how much?

Have you got your D3 now? Are you also planning to start K2-MK7 and magnesium, D3's important co-factors?

Justliloldme profile image
Justliloldme in reply to SeasideSusie

Hi Susie

Hubby won't be able to come tomorrow - he needs to take our daughter to school but I will speak to him tonight & maybe get him to write down his thoughts so I can take them in.

I've put 3 stone on in 2 years, despite eating well & regular exercise. It was only in May after help with diet & exercise with a personal trainer did I think that it could be thyroid related as I was doing exactly as I should & the scales & my size were refusing to budge!

It was only then reading hypo symptoms that I realised that other things that I hadn't paid much attention too were also hypo symptoms. Tiredness, cold hands & feet, dry skin, making mistakes at work, forgetfulness etc.

I did take a list of these symptoms with me the 2nd time I saw the doctor & she again said these were all menopause symptoms. Well, she's now tested for hormones & they have come back as 'normal pre menopausal levels' - so I think we can say its not the menopause.

I have been taking Jarrow Methylcobalamin B12, 5000mcg & Jarrows B-Right Optimized B-Complex on the advise of Greygoose & yourself & I have felt slightly better - I've been taking these for just over 6 weeks & am going to drop down to 1000mcg of B12 once I've done 60 days on the large dose.

I started supplementing with D3 yesterday so I won't feel the benefit just yet - I wasn't aware of the K2-MK7 and magnesium - I'll have a look into them.

Thank you so much for your support on here - I have started to believe that I'm making it all up & its just old age creeping in - but I shouldn't be thinking like that at 43!

SeasideSusie profile image
SeasideSusieRemembering in reply to Justliloldme

Justliloldme Shame your hubby can't go with you. If you have no joy with your GP tomorrow then I would arrange for your hubby to accompany you to another appointment. It really is amazing how much difference it can make to have the support of someone else who can explain to the doctor just how much impact the symptoms have on both your lives.

As for your folate, I wonder if you would be better trying Thorne Basic B Complex. I used that, one a day, and in 2.5 months I went from the very bottom of the range to the very top. Maybe finish your Jarrows first then try the Thorne. Or you could use a purely methylfolate supplement until you get your folate level up then change to a B Complex.

SeasideSusie profile image
SeasideSusieRemembering

One other thing Justliloldme - was your GP test done first thing in the morning and fasting from the previous evening meal? That would give the highest possible TSH which is what you need.

Justliloldme profile image
Justliloldme in reply to SeasideSusie

Yes, blood tests were done at 9.30 (earliest appointment I could get) and I'd fasted for 11 hours.

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