Hello! I am new to the forum. I am 68 years old and convinced that I have the under active thyroid which runs in the family...everyone on mum's side were (eventually) diagnosed, but not before feeling unwell for many years. My uncle almost died from a lack of being diagnosed. Why is it so difficult to get a diagnosis?
My sister and I have so many symptoms, including a slow pulse rate (down to 54 bpm sometimes). We have both put on a lot of weight and can't shift it despite not eating very much. I have awful bowel problems, bloating, food intolerances, etc., for many years, and was also on PPI for gastric reflux, which I've weaned myself off.
I now have high blood pressure, which I'm sure is related, but the meds for this have caused my gastric reflux to return with a vengeance... I just don't know what to do as blood tests always come back 'normal'.
Are there any foods I can eat to speed up my metabolism, or natural meds? I have a very low income so can't afford to see anyone privately.
Thank you for reading... I look forward to hearing from you.
Regards, Dookie
Written by
Dook
To view profiles and participate in discussions please or .
First thing is, do you have any actual blood test results? if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Hashimoto’s is extremely genetic and frequently runs in families
Ask GP to test vitamin levels and thyroid antibodies as you have close family who have autoimmune thyroid disease
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Many thanks for the quick reply... maybe you should be called FastDragon!
I appreciate the advice & will look into the online GP services. I find GPs are not always willing to discuss blood test results, either, as they can be complicated to decipher.
I have now received the results of the T3 T4 tests I had done... It would appear that I am withn the normal range for these... (apologies for the format- I'm not sure how to attach things)...
TSH
27 Nov 2020
1.64
mIU/L
0.27 - 4.2 R
0.27
4.2
Free T3
27 Nov 2020
5.04
pmol/L
3.1 - 6.8 R
3.1
6.8
Free Thyroxine
27 Nov 2020
14.4
pmol/L
12 - 22 R
12
22
Whilst this is good news, it still doesn't explain all the symptoms I'm having.... I'm wondering what is the next step...if anything?
I suppose I need to arranged a full blood count, but my GP has told me they will only be doing emergency blood tests and that I won't be able to get one until the new year....
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B is another option that contain folate, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
SlowDragon is right - you really need to get your historic blood tests as a first step (a) because that will show exactly what has been tested (probably only TSH, which as she says, isn't anything like enough) and (b) because that will show where "in range" you are ...
I have had some success getting full testing from the GP by saying that these are tests recommended by Thyroid UK - but it is likely that, if you aren't currently on thyroid meds, the GP (or lab) will refuse to test free T3 (arguably the most important result, as this shows how much active thyroid hormone you are producing) and vit D is also quite tricky to get too.
Where you are in range is also really important. The lab ranges vary from lab to lab, but a TSH of more than 3 is always bad news - and would result in you getting thyroid treatment in many countries, but not the UK where they want you to be really ill first and often make you wait until it's waaaay out of range, sometimes as high as 10.
But if the lab range for free T4 is say 12 - 22 and your result is 12.5, you would be "in range" but only just and feeling dreadful. whereas if it's nice and high, say 19.5, you would feel much better. But both results would be "normal" and "in range".
If all the jargon is confusing, may I also suggest you look at helvella 's excellent glossary - look under "pinned posts".
Incredible that you have to be really ill before they will treat you, but I know this is true as my uncle was practically dead by the time he got help... he had to scream at the GP to find out what was wrong with him...
But why?! What is the purpose of letting people suffer... are the meds expensive?
I really had to press for B12 shots some years ago when I was on meds for gastric reflux... they would only give me one shot every 3 months so it didn't really help... and I know B12 is cheap, so it really doesn't make any sense at all.
Yes, I knew that PPI does that... I was on them for ages... I've had cameras up and cameras down & no explanation for my long term gastric problems... they say could be adhesions, or IBS... I've also looked up Bile Acid Malabsorption as the stuff that comes out is pure bile... bright orange and burns so much! Possibly linked to removal of gall bladder in 1992... that's when I started to get problems.... But the weight gain over the past year is horrible (I've always weighed 7 stone), and now the high blood pressure, high cholesterol, dry, flaky skin, brittle nails, thinning hair (no body hair), insomnia & extreme tiredness...etc., etc...
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
But why?! What is the purpose of letting people suffer... are the meds expensive?
Why? No idea. They will say they are following the guidelines, but this doesn't explain why the guidelines require TSH to be sometimes more than double the upper lab range before they will do anything. Rather makes a mockery both of even having an upper lab range and "do no harm".
Under-active thyroids are very common (levo is the third most-prescribed medication in the UK - and no 1 in the US) and yet thyroid care is almost ignored in GP training. I'm guessing that when a GP or family member is ill they don't wait until TSH gets to 10 ... [natural cynic]
Are the meds expensive? No; levo costs a few pence per tablet. Lio (or T3 meds, which benefits people like me who are "poor converters" of free T4 to free T3) is wickedly expensive in the UK - but this is down to utter NHS buying incompetence - it's much, much cheaper in many other countries ...
Bottom line though is that it's forums like this which help many people poorly-treated by the NHS. We have to educate ourselves and fight our own battles x
Thanks for the replies... I'm so glad I found this place... I KNOW I have this disorder, so many symptoms and the family history, too... and my sister is the same.... we are both so desperate to find help.
My GP told me he would be struck off if he gave me Levothyroxine because my TSH was in range. My T4 and T3 were very low in the range but he wasn't interested in that. My head was balding and my nails were lifting off their beds and he just wasn't interested. I had taken Levothyroxine in the past and was also was given an exemption card but he just would not help. At least I know what to do if it happens again and certainly won't be going to see him about it. I will do my own blood tests and self-medicate again if I have to.
Yes it’s sad some have to fight to get diagnosed. May be for some doctors they feel out of their depth so shy away from it! I have no proof of that but the thought has often been there!
I think it's very true that GPs will only treat the symptoms and not the cause. Take my gastric reflux for instance... very keen to prescribe horrible meds for the reflux, not interested that it might be a problem with my thyroid... ditto high blood pressure... it goes on and on... they won't look at the elephant in the room... just bizarre!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
How useful is a reverse T3 test in diagnosing HYPOTHYROIDISM?
How bad do I need to get before I will be treated?
20 years on and getting worse. How do I get my doctor to take me seriously?
I can't get an answer, is this related to Hypothyroidism?
How to get help for hypothyroid B12 deficiency?
