Hashimoto?

[Lydia1960]

Having difficulties regulating my body temperature. Went for a walk at 6am, today, but couldn't go far due to overheating and felling dizzy. Still am, with fan on to cool me.

Read about needing to convert T4 into T3 and to have optimal levels of iron and cortisol. Have loads of symptoms, but was told my blood test didn't indicate that anything was wrong.

Going to ring my doctor today to request blood test specifically with this in mind. And prepared to pay for these tests if needing to.

Just how serious is this disease and what is the long term prognosis of it? And what questions should I put to my GP?

[jamesal0]

Hi Lydia

Do you have you actual temps recorded. I'm the other way now (Hypo), I loose temp the moment I'm not getting lots of NDT Thyroid. Is there any chance your are Hyper - you would need TSH, T3 and T4 bloods to start with.

Before I was diagnosed Hypothyroid I suffered over heating and dizzy spells with exercise (jogging), apparently your Thyroid overproduces when under attack from auto immune antibodies.

J

[Lydia1960 in reply to jamesal0]

Which tests would I need to cover all of those possible conditions? I'll probably have to go private for those tests but if they are more accurate than the NHS's ones, then I'm prepared for that.

[greygoose in reply to Lydia1960]

Lydia, what tests have you already had done? It's very difficult to get the NHS to do most tests concerned with thyroid, because they just don't want to diagnose you. But, if you were having them done privately, you would need :

TSH

FT4

FT3

TPOab

TgAB

vit D

vit B12

folate

ferritin

That would give you a pretty clear picture. But, no way will the NHS do all that. The most you're likely to get is TSH and FT4.

Lose of temperature control is a hypo symptom. But, you can be hypo without having Hashi's.

How serious is it? Well, if untreated, it will eventually kill you. But it will be a long, slow miserable death. Low thyroid hormone will affect every part of your body - heart, kidneys, liver - even your brain. So, despite what doctors think, it is very serious, indeed.

[Lydia1960 in reply to greygoose]

Thanks for informing me of just how serious this could potentially be. That serious. The symptoms I am already having, practically nodding off at times so fatigued do I feel, with an extreme lack of energy and foggy thinking, there must be something wrong.

Someone suggested on this forum that my pituitary gland was struggling, but that the NHS won't take any action until the blood test goes to a certain level..

[greygoose in reply to Lydia1960]

How would they know it was a pituitary problem without seeing your results? Have you had any tests done? If so, post your results and ranges, and we'll be better able to help you.

With a pituitary problem (secondary hypo) you have low TSH and low Frees. With Hashi's, you have high antibodies. But, there are so many other possibilities.

[JS33 in reply to Lydia1960]

Do what grey goose says , get a private test, particularly with those anti bodies. you have nothing to lose but some money , and everything to gain by knowing.

Not wanting to frighten you , but while the body normally adjusts to keep you going , you can also go down hill rapidly in circumstances where the body is under pressure - starving or very cold climate, infection etc.

If you know , you can do something about it. How much help you get via the NHS is debatable.

[Lydia1960 in reply to JS33]

Will I need a test for cortisol stress and iron status check? And which ones of those tests greygoose suggested are the ones relating to the antibodies blood tests..

[greygoose in reply to Lydia1960]

TPOab and TgAB - AB stands for AntiBodies.

[Lydia1960 in reply to greygoose]

Just checked the tablets for thyroid support formula for healthy thyroid gland function. Would it be okay to try these until I can get an appointment with my GP to find out if they will allow me those blood test or if I need to go private?

[cwill in reply to Lydia1960]

I would not start anything until you are tested.

[greygoose in reply to Lydia1960]

Well, that very much depends on what tablets they are. But, if you're hoping to have labs that will get you diagnosed, taking thyroid support doesn't sound like a very good idea, because it might change your results.

You don't need to 'go private' to get private blood tests. You can get tests without any intervention from a doctor. Have a look on the ThyroidUK home page.

[JS33 in reply to Lydia1960]

You'll screw the results.

Order a test from medichecks or blue horizon , you'll get the kit the next day , and the results 1 or 2 days later - blue horizon I tend to find to be quicker ,usually next day.

Get the antibodies and the T4 and T3. You can print off your results and show your GP , no contest. The NHS will only test TSH but if your private test shows low hormone levels , they have to treat you.

Many people can go for years suffering with 'unknown'low hormone levels but a normal TSH and are told by their doctors they are well.

[Lydia1960 in reply to JS33]

Does Medicare do all the tests mentioned by greengoose? Where to get those if they don't?

Just spoke to my doctor and have an appointment to see her tomorrow about blood tests. What questions do I need to ask her on this subject?

[JS33 in reply to Lydia1960]

yes , go on the medichecks website or even give them a call if you are not sure which test to order.

The thing with the NHS is that they are seriously behind the curve when it comes to the thyroid.

Many people on here, including me , pay fro their own thyroid monitoring blood test and, or , use their own source of thyroid meds if they don't respond well to the levothryoxine which is the only medication the NHS provides.

You will likely find your GP is limited in the blood tests they can order. And those they can are not sufficient to give a full picture of your thyroid health. This is how many people go on being u-diagnosed or poorly treated.

They do , however , have to respond to the evidence presented to them . even if it's from a private blood test.

Check out a website called 'stop the thyroid madness ' for more info.

[Lydia1960 in reply to JS33]

Thanks for this information. I will check with medicare what tests they do on this matter. Good advise..

[fibrolinda in reply to Lydia1960]

bluehorizonmedicals.co.uk/P...

medichecks.com/thyroid-func...

[Lydia1960 in reply to fibrolinda]

thanks for this link. Going ahead with things..

[Gingergirl1948 in reply to greygoose]

Thankyou again

[Hidden in reply to greygoose]

Thank you I have written that list down for later! See my docs soon x

[cwill]

I suggest you get blood pressure monitor and thermometer to start taking readings on waking. There are good apps these days that record all tests and log symptoms producing reports when you want them. Or there is the standard pen and paper method. Log all your symptoms with duration and severity. And have the tests recommended form Medichecks or blue horizon. That way you have your own data and can look for trends. This would also help inform a chat with a doctor that is prepared to listen and examine you. They appear to be like hens teeth. Knowledge is power...

[Marz]

Lydia1960 - 2 months ago both SeasideSusie and humanbean gave you detailed lists of the required testing to indicate your health status. Please refer back to your earlier posts/replies to save me writing it all again 😊😊

You can click onto names of people posting and read their Profiles to understand how this condition affects people .... including mine 😎😎

[Lydia1960 in reply to Marz]

It's because it is summer time now, and things are heating up, so body is reacting to this now. And I have some savings now because those tests are quite expensive and costs are a factor here, so needed to save money for these tests.. but thanks for the reminder..

[Marz in reply to Lydia1960]

Good health is something I found without doctors. I am a pensioner living in Greece and am far from well off. Still working at 70. Yet I still pay for all testing so I can take control of my health ..... surely it has to be worth it 😊

Did you click onto my name and have a read -probably not as I think it may have prompted some sort of response !!!

[Lydia1960 in reply to Marz]

Yes I did read your profile. As my mother would have put it, 'you appear to have been in the wars...'. But a strong character filled with fortitude so keep coming back after every blow. That's obviously what has kept you going. That strong streak of determination...

[Marz in reply to Lydia1960]

..... and wanting to be well. I am also prepared to read and learn from others who know more than me 😊

Many thyroid sufferers are Type A personality so most of us have the will to fight .....

[Lydia1960 in reply to Marz]

Type A personalities can be very determined, competitive, and ambitious, which is great. That's how the world works, but one must always learn to take a step back sometimes, to smell the flowers and learn to relax. Stress is not a good thing in life so do take care of yourself...

[Marz in reply to Lydia1960]

Yes living in Crete is very much about appreciating the simple things. I teach yoga twice a week and swim in my pool daily in summer surrounded by olive trees. My Greek dog has poorly back legs so our walks are slow and meaningful as we soak up our surroundings. Life is good with time to smell the flowers. Thank you for the reminder of my good fortunes. Be well too ....😎

[Lydia1960 in reply to Marz]

Thanks..

[Gingergirl1948]

Ah, my thermometer has been shocking for years ....it becomes a clearer picture now. I intend to have more testing. I want to take control.

Exhale slowly .......it helps

[Lydia1960]

Got the blood tests back from my GP surgery. Thought I'd wait to see what they said.

Thyroid function test:-

Serum free T4 level:- 15.7pmol/L.

Serum TSH level:- 1.42miu/L.

Serum ferretin:- 27ug/L.

Serum folate:- 1ug/L.

Serum vitamin B12:- 494ng/L.

HbA1c level:- IFCC standardised 38mmol/mol

Total white cell count:- 7.1 10+9/L.

Haemoglobin estimation:- 134g/ L.

The rest are the results for a full blood count. Are these results needed?

Blood pressure was 133/89mmHg.

Weight was 73kg.

Can anyone tell me if I need to go ahead with the private blood test...?

[Greenwall in reply to Lydia1960]

Hi. It's more helpful if you add the ranges too. eg serum folate 1 (x-y)

You'll find there are numbers in brackets after the rsults. They are the "normal range".

You may get faster response now if you start new post with results which include ranges.

[Lydia1960 in reply to Greenwall]

Thanks for that, Greenwall. Going to get a private blood test next week, so I'll wait till I get those results and the doctors comments too. Should make things clearer..