Looking for some advise and support please. - Thyroid UK

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Looking for some advise and support please.

17 Replies

Hi, I am new to the Thyroid UK community today. I am looking for some advise please. I am 100% positive I am suffering from Hyperthyroidism and have been for 15 + years. When reading signs and symptoms, case studies and patient's own stories I am a text book case. I am really beginning to struggle now day to day physically and mentally.

Unfortunately I am constantly hitting brick walls when it comes to getting a diagnosis and treatment. One of the last GP's I seen was a locum and said I was trying to find a medical excuse for my symptoms rather than face up to the fact I need to change my diet and lifestyle....charming!! I eventually got her to agree to a bloods test to check my thyroid function. My TSH was 0.35 T4 - 12.6 T3 - 4.3. When getting these results I though FINALLY! But no :( the GP who reviewed my results said my thyroid function is fine and this was not needed to be investigated any further and went on to give me the diet and lifestyle change speech again, even though I am symptomatic!! I really don't know where to turn anymore. Has anyone else have similar stories or any advise would be greatly appreciated. Thank you xx

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17 Replies
SeasideSusie profile image
SeasideSusieRemembering

Welcome to the forum Hidden

My TSH was 0.35 T4 - 12.6 T3 - 4.3

Do you have the reference ranges for these results please? Ranges vary from lab to lab so it's impossible to interpret FT4 and FT3 without the ranges that came with your result. TSH is easy as that range doesn't vary by much and we can see it's low but possibly at the very low end of the range.

If you don't have the ranges, pop along to your surgery and ask for a print out of your results, we are legally entitled to our results here in the UK.

Thyroid antibodies are also important, were these done?

went on to give me the diet and lifestyle change speech again, even though I am symptomatic

Are you overweight or underweight?

What symptoms are you experiencing?

in reply to SeasideSusie

Hi thank you for your reply. I really appreciate it :)

My T4 range was 12-22 pmol/l

T3 range was 3.1 - 6.8 pmol/l

They checked my kidney, liver function and FBC which were all within normal ranges. No other bloods tests were discussed or offered. I was very much given the brush off.

According to my BMI I am currently 4 stone overweight. I struggle 24/7 with increased appetite and cravings. I am never full, never have that trigger to say I'm satisfied and to stop eating. If i wasn't so active I would dread to think what my weight may be. My Symptoms are:

*overheating/do not like heat

*sweating+++

*flushing skin if heart rate is increased at all.

*dry skin

*hair loss, lack of body hair

*resting heart rate of 90-100 bpm

*shakes

*cant sit still.

*anxiety, nervousness, overthinking

* muscle and joint pain

*puffy face and hands

*dry eyes

*increased appetite/cravings/binges

*mind on overdrive, hard to get to sleep - restless broken sleep

*irregular bowel habit and menstrual cycle

*palpitations

*jumpy legs

This may not be connected but I have also in the last couple months been having more coughing/chocking fits when eating and drinking.

Many Thanks Again

Sarah x

greygoose profile image
greygoose

Did you really mean 'hyperthyroidism' (overactive thyroid - low TSH, high FT4/3)? Or did you mean 'hypothyroidism' (underactive thyroid - high TSH, low FT4/3)?

Your TSH is on the low side for someone not taking thyroid hormone replacement, but doesn't suggest hyperthyroidism. And your FT4/3 look quite low - but impossible to tell without the ranges. Could you add the ranges, please?

Those three tests don't tell the whole story. You also need antibodies tested: TPO antibodies and Tg antibodies. And, it would be a good idea to get nutrients tested: vit D, vit B12, folate, ferritin. Low nutrients can sometimes cause thyroid-like symptoms. :)

in reply to greygoose

Hi thank you for your reply. I really appreciate it :)

I did mean hyperthyroidism, but in all honesty I am rather confused about thyroid problems

My T4 range was 12-22 pmol/l

T3 range was 3.1 - 6.8 pmol/l

They checked my kidney, liver function and FBC which were all within normal ranges. No other bloods tests were discussed or offered. I was very much given the brush off.

According to my BMI I am currently 4 stone overweight. I struggle 24/7 with increased appetite and cravings. I am never full, never have that trigger to say I'm satisfied and to stop eating. If i wasn't so active I would dread to think what my weight may be. My Symptoms are:

*overheating/do not like heat

*sweating+++

*flushing skin if heart rate is increased at all.

*dry skin

*hair loss, lack of body hair

*resting heart rate of 90-100 bpm

*shakes

*cant sit still.

*anxiety, nervousness, overthinking

* muscle and joint pain

*puffy face and hands

*dry eyes

*increased appetite/cravings/binges

*mind on overdrive, hard to get to sleep - restless broken sleep

*irregular bowel habit and menstrual cycle

*palpitations

*jumpy legs

This may not be connected but I have also in the last couple months been having more coughing/chocking fits when eating and drinking.

Many Thanks Again

Sarah x

greygoose profile image
greygoose in reply to

Well, that all sounds like hypothyroidism to me. Not hyper at all.

Anyway, your FT4 is very low, and your FT3 is also rather low. And, with a TSH of only 0.35, that smacks very much of Central hypo, to me.

I've just answered a question about Central Hypo, where I explain it all, so I'll just link you to it.

healthunlocked.com/thyroidu...

in reply to greygoose

Thank you so much for your help. I cannot put into words how much of relief it is to have help and support and not to be made to feel like a time waster.

greygoose profile image
greygoose in reply to

You're very welcome. :) It's time that doctors realised that people don't go to see them for fun, but because there's something wrong. Just because they don't know what's wrong, doesn't mean there's nothing wrong. And, it's their job to find out just why people need to see them. What do they think they get paid for? Makes me so cross! :)

in reply to greygoose

I completely agree with you

SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

in reply to SlowDragon

Hi thank you for your reply. I really appreciate it :)

My T4 range was 12-22 pmol/l

T3 range was 3.1 - 6.8 pmol/l

They checked my kidney, liver function and FBC which were all within normal ranges. No other bloods tests were discussed or offered. I was very much given the brush off.

According to my BMI I am currently 4 stone overweight. I struggle 24/7 with increased appetite and cravings. I am never full, never have that trigger to say I'm satisfied and to stop eating. If i wasn't so active I would dread to think what my weight may be. My Symptoms are:

*overheating/do not like heat

*sweating+++

*flushing skin if heart rate is increased at all.

*dry skin

*hair loss, lack of body hair

*resting heart rate of 90-100 bpm

*shakes

*cant sit still.

*anxiety, nervousness, overthinking

* muscle and joint pain

*puffy face and hands

*dry eyes

*increased appetite/cravings/binges

*mind on overdrive, hard to get to sleep - restless broken sleep

*irregular bowel habit and menstrual cycle

*palpitations

*jumpy legs

This may not be connected but I have also in the last couple months been having more coughing/chocking fits when eating and drinking.

Many Thanks Again

Sarah x

SlowDragon profile image
SlowDragonAdministrator in reply to

Would suspect you have Hashimoto's (autoimmune hypothyroid) - causes all these symptoms and more, especially early on

Essential to test vitamins and thyroid antibodies

An ultrasound scan of thyroid can be helpful too but FIRST step is full private testing via Medichecks or Blue Horizon

Make sure to do test as early as possible in morning and fasting and only test on Monday, Tuesday or Wednesday. Post of test kit immediately after and results are emailed to you 2-3 days later

Thousands on here only made progress with full testing privately

Hi thank you all for your replies. I really appreciate it :)

My T4 range was 12-22 pmol/l

T3 range was 3.1 - 6.8 pmol/l

They checked my kidney, liver function and FBC which were all within normal ranges. No other bloods tests were discussed or offered. I was very much given the brush off.

According to my BMI I am currently 4 stone overweight. I struggle 24/7 with increased appetite and cravings. I am never full, never have that trigger to say I'm satisfied and to stop eating. If i wasn't so active I would dread to think what my weight may be. My Symptoms are:

*overheating/do not like heat

*sweating+++

*flushing skin if heart rate is increased at all.

*dry skin

*hair loss, lack of body hair

*resting heart rate of 90-100 bpm

*shakes

*cant sit still.

*anxiety, nervousness, overthinking

* muscle and joint pain

*puffy face and hands

*dry eyes

*increased appetite/cravings/binges

*mind on overdrive, hard to get to sleep - restless broken sleep

*irregular bowel habit and menstrual cycle

*palpitations

*jumpy legs

This may not be connected but I have also in the last couple months been having more coughing/chocking fits when eating and drinking.

Many Thanks Again

Sarah x

SeasideSusie profile image
SeasideSusieRemembering

Sarah

TSH: 0.35

FT4 - 12.6 (12-22)

FT3 - 4.3 (3.1-6.8)

I'm not diagnosing (I'm not medically trained or qualified) but it's possible it's autoimmune thyroid disease (Hashimoto's) which is where the immune system attacks and gradually destroys the thyroid. You can swing from Hypo to Hyper and test results fluctuate.

Taking into account your symptoms, these seem to be a mixture of

hypOthyroid thyroiduk.org/tuk/about_the...

and hypERthyroid thyroiduk.org/tuk/about_the...

Did you have thyroid antibodies tested?

For underactive thyroid - TPO and Tg - Hypothyroidism

For overactive - TSI and TRAb - Graves Disease

Your weight gain probably means Hypothyroidism/Hashimoto's.

If thyroid antibodies haven't been tested you can ask your GP. Probably only TPO will be done at primary level.

You can do what hundreds of us here do and that is a private test with one of our recommended labs. I think this might be your best next step, get a full thyroid/vitamin panel to give a full picture.

Medichecks Thyroid Check ULTRAVIT medichecks.com/thyroid-func... You can use code THYROIDUK for a 10% discount on any test not on special offer

or

Blue Horizon Thyroid Check PLUS ELEVEN bluehorizonmedicals.co.uk/t...

Both tests include the full thyroid and vitamin panel. They are basically the same test but with the following small differences:

For the fingerprick test, Blue Horizon requires 1 x microtainer of blood (0.8ml), Medichecks requires 2 x microtainers (total 1.6ml)

Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.

B12 - Blue Horizon does Serum B12. Medichecks does Active B12.

Serum B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Serum B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)

When doing thyroid tests, we advise:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it will give false results (Medichecks definitely use Biotin, they have confirmed this and the amount of time to leave the supplement off).

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

An alternative possibility is Central Hypothyroidism which is where the TSH is low, normal or slightly elevated with a low FT4. Central Hypothyroidism is where the problem lies with the pituitary (Secondary Hypothyroidism) or the hypothalamus (Tertiary Hypothyroidism) rather than the thyroid itself. Central Hypothyroidism isn't as common as Primary Hypothyroidism and very few doctors have heard of it. However, I'd do the above test first, post results on the forum with their reference ranges, and members will comment.

in reply to SeasideSusie

Thank you so much for your advise. I think because like you say I have hyper and hypo symtoms I have been getying a bit lost amd confused. I have ordered the Ultavit test this evening, so hopefully the results will help make things clearer. Thank you again. I really appreciate your help and advice xx

Lalatoot profile image
Lalatoot

Hyper and hypo symptoms are not always distinct. Unfortunately some Internet sites s and Dr's. list symptoms as being distinct for hyper and other symptoms as being distinct for hypo. I have been both hyper and hypo and I can say that the reality is more blurred. For example when I am hypo my heart rate increases. When I am hypo I lose weight. It is confusing. One size does not fit all. Please get the tests suggested and pop your results and ranges on here. Folks will try to help you understand what is going on with your body.

in reply to Lalatoot

Thank you so much. I orded my blood test kit yesterday, so fingers crosses for results soon x

NWA6 profile image
NWA6

Oh my! Those results are rubbish! I’d second everything that everyone has said 🤗

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