My TSH is normal, does that mean my thyroid is fine?

[usernamezero]

Hi, I'm new here so forgive me if I come across at all clueless. I've written quite a lot but if anyone would take the time to read and help, I would be very grateful.

I recently went to my GP and had a blood test for TSH, which came back at 2.7 (which I was told was within range). I had the test at 9:30 in the morning, with no breakfast before since I was advised that it helps the accuracy of the test, so I trust that it's a fair representation of my TSH, but my problem is that my symptoms seem to be getting worse. My bp is normal but my pulse was 57bpm (a tad low). I was told ferritin was normal too.

A bit of context of my symptoms:

I suffer from being very cold, and even when I dont feel cold in myself, my hands and feet are always cold to the touch, feel numb/tingly and appear grey.

I also experience extreme fatigue, even standing up and walking around for too long tires me out (i dont get out of breath, I just feel wiped out). I have very bad constipation, I simply can't go, and even when I just sit it out and wait up to 2 weeks for it to happen, I end up becoming impacted (my doctor gives me laxatives on the -impaction dose).

I also have terribly dry skin, especially behind my ears, my arms and hairline. What started off as dandruff is now becoming sore and scabby, bordering-on psoriasis with hairloss. My girlfriend is a training-hairdresser and she cannot find a cure to my dry scalp, even with all conditioning and moisturising treatments.

I cannot lose weight, I've tried a low carb + reduced calorie diet (high in protein and vegetables) because I was gaining weight at a crazy rate for no reason. I manage to maintain weight on this diet, even though I'm pretty sure the average person would lose a little bit. I went on a skiing trip, and ate what everyone else ate, abandoning my low carb diet but only for 2 weeks. I noticably gained a lot of fat, and the scale went up by 8lbs!

I feel so miserable, tired and cold all the time, and I feel I'm more like 70, not 17.

It is worth mentioning that my dad has hypothyroidism, and so did his mother. It was him who suggested I went to get tested, as whenever I mentioned my symptoms to anyone else, they wouldn't take what I said seriously as I'm young.

I also had anorexia when I was 14. I have been fully recovered for 3 years and since have even been overweight again, but I feel the symptoms I described have been getting increasingly worse and noticable since my eating disorder. I'm not sure if an previous eating disorder could affect the thyroid?

My GP tested for TSH which came back normal and he said he is satisfied. My question is, what do I do now?

Is it possible that my thyroid is underactive even with a normal TSH result? He didn't test T3 or T4, so should I get an appointment to test that next? or does a normal TSH rule everything out?.

I really just want to feel better, and since my symptoms line up and it runs in my family, it seems plausible that my issues may be thyroid related, so should I carry on exploring that option?

I know that was a lot to read, any responses are welcome, and if you think my symptoms line up with another condition, please share.

Thank You

[SeasideSusie Remembering]

The problem is that TSH alone doesn't give a full picture. It rules out primary hypothyroidism only. There is also Central Hypothyroidism which is where the problem is with the pituitary or the hypothalamus and that is indicated when TSH can be low, normal or slightly raised, along with a low FT4.

So ideally you need FT4 tested along with TSH as a minimum. Testing FT3 and thyroid antibodies would also help.

You could ask your GP to do the full testing. If he won't then you can get private tests with our recommended labs to do at home, either fingerprick or venous blood draw at extra cost.

Please ask if you want details of those private tests.

[usernamezero in reply to SeasideSusie]

Hi thank you so much for your response. The details of the private tests would really help, just incase my GP is reluctant to do anything further. Thanks!

[SeasideSusie Remembering in reply to usernamezero]

Usernamezero

This one is a particularly good bargain until the end of the month, the full thyroid panel plus all the important vitamins and minerals

medichecks.com/thyroid-func...

Without the vitamins and minerals but all the important thyroid tests is this one medichecks.com/thyroid-func...

But for the extra £20 I would recommend the first test.

Post results on the forum in a new thread for comment (remember to include the reference ranges).

The other recommended lab, same tests

bluehorizonmedicals.co.uk/t...

bluehorizonmedicals.co.uk/t...

When doing the test, fast overnight (water allowed, be well hydrated) and do it early in the morning, no later than 9am.

[Cooper27]

It would be useful if you also got FT4 and FT3 tested, and TPO antibodies, however most doctors won't do these without good cause. If you can afford to, you can get them tested yourself via Blue Horizons/Medichecks for around £90 - I'm hoping someone else will be along shortly with links to the tests, I can't find them easily on my phone.

[usernamezero in reply to Cooper27]

Thank you for your advice. I think I'll book another appointment and see if he's willing to do those further tests. If not, then I guess I'll be saving up for a bit!

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

Low vitamins are common and can upset Thyroid or cause symptoms in their own right

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

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 money off offers.

All thyroid 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, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get tested.

As your Dad and his mother both had hypothyroidism, it's likely this is Hashimoto's. It runs in families

Anoerexia can also upset TSH so that it doesn't respond well (a bit like central hypothyroidism) so its particularly important to test FT3 and FT4 as well in your case

[usernamezero in reply to SlowDragon]

Thank you very much, your reply was very informative and helpful I'll definitely push for the full thyroid evaluation, whether that's with my GP or privately. From what I've read on other posts on this site, the NHS seem quite uneager to run all these tests. I'm hoping my GP might be more sympatheic.

[SlowDragon Administrator in reply to usernamezero]

Would be good idea for your Dad to go with you to see GP

A) because he is hypo

B) because medics often take the situation more seriously with a witness/supportive family member

C) he can back up your list of symptoms as true

GP should test for FT4 and FT3, plus antibodies

If he puts suspected autoimmune thyroid disease on blood test form, lab should do antibodies

Similarly may need to add note on possible central hypothyroidism to get FT3 tested

Vitamins should be tested too

[usernamezero in reply to SlowDragon]

That’s a very good piece of advice. I’ll see if I can drag my dad along! I feel like my doctor might not brush my situation aside with someone who is diagnosed with hypo right next to me. Thank you!

[SlowDragon Administrator in reply to usernamezero]

We recommend that someone else goes along a lot!

It's often astonishing the difference.

[Valarian in reply to SlowDragon]

Not just the effect on the doctor of having an extra person there. The shock of discovering you’ve got something that is likely to affect you for the rest of your life, plus ‘thyroid fog’ (which can affect both hypos and hypers), can mean even the most organised of us forget to ask all the questions we planned, or take in everything the doctor says

[Mummysue2]

You poor thing. I'm on here to do research for my daughter but I'm Hypo too. My daughter has been diagnose with ME, Chronic Fatigue Syndrome and Fibromyalgia during the last 10 years, she's 42. I was also diagnosed with Fibro 10 years before I was finally told my problem was Hypothyroidism. The NHS pay all your prescription costs for ALL your prescription drugs once you've been diagnosed and I think the money comes from at least part of the surgery's allowance for you (not sure about this bit) so it's not in their interests to give a positive result to the test especially if it's someone who has a lot of other prescription drugs. They may also have raised the levels of the test. In US and France I think Thyroxin is available for lower levels than in the UK and here I don't think they do the T3 test at all. All your symptoms are exactly what we both experience. We've recently sourced some Thyroxin for my daughter and after 3 months on 25 micrograms per day she's starting to get well, she's regular, she's reduced her pain killers, she's loosing weight and is much less fatigued. Result! You are not alone, keep going but nag your GP or fork out for a private doctor if you can afford it, it will be worth it.

[usernamezero in reply to Mummysue2]

Thank you for your kind reply. It’s nice to know I’m not alone with all this. I’ve seen some people who say they source their own meds overseas because it’s so difficult to get the right treatment over here with some doctors being so reluctant! I’ll make sure I badger my doctor, get the right tests done and take it from there. I hope you and your daughter are well now thank you for your help

[SilverAvocado]

You've had lots of great advice here. A TSH of 2.5 is well inside the 'normal range', but its still an unlikely result for a well person to have. People with healthy thyroids have results around 1-1.5 or 2. So yours is already getting a bit unusual.

But unfortunately this can be a difficult position to be in. Doctors don't take it seriously until it gets outside the normal range, or even up to 10, which is a very high result People can be very very ill for several years to get to that point.

Getting the full set of bloods will be useful, because then you will know exactly where you stand. If I were you I'd ask your parents to help with the money, and get the offer SeasideSusie mentioned. I think it only lasts till the end of the month. But maybe you are more independent and brave than I am

[usernamezero in reply to SilverAvocado]

Thank you for your reply, I’m planning on asking my doctor for the further thyroid tests and I’ll keep the post updated If I have to do it privately then I suppose it’s just something I’ll have to do.

[SilverAvocado in reply to usernamezero]

Good luck You sound like you have things very under control. Unfortunately we have to be very on the ball as thyroid patients.

[Angel_of_the_North]

Impossible to tell from TSH alone whether thyroid is OK or not.

[elicarol]

Hi I can totally relate to your skin condition in the scalp ears etc. in the beginning My first signs was fatigue muscle weakness this was 2000 after many doctors tests kidney stones hypothyroidism pain goiter I was dealing with many things.after best hospital doctors in southern calif. no one could help me now im bed bound my. skin head like behing my ears just like you say you have.so many meds nothing works my digestive system failing gaining over a pound a day kidney stones no sleep on my last leg. I was taken to a to a a homeopathy doctor who was a reg doctor owned his own health food store and his own pharmacy My G P. sent me to see him knowing i was going down fast. He did blood work 7days a week for about 20 days i was no longer able to eat he out a catheter feeding tubs and for nine months i was on TPN total. parental nutrition nothing by mouth based on blood w[r work is what i was fed i started feeling better.but now the results from the blood work which gave me most of symptoms you have. I had hypothyroidism but i also had .adrenal tumor that was producing hormones thats why my tests showed ok i had it removed 2006 2016 i once again have that crud on my head behind ears no sleep and a new doctor that just read test levels i requested extra testing for cortisol blood and urine saliva and results came back it is somthing like i had only cushings this time its hard to diagnosisbecause it has to release while doing the test for me it was everything plus adrenal keep pushing your symptoms poi t to adrenal problem if we have so much in common keep fighting

[usernamezero in reply to elicarol]

Thank you for sharing your experience, it sounds awful. I really hope you’re feeling a bit better!