Hello new to this but need to talk to people with same issues. My lastest TSH is 36.8 is this normal

[Tpink123]

TSH level

[Jaydee1507 Administrator]

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start.

Perhaps if you could give us a bit of background about why you had a thyroid blood test and if you are already diagnosed and on treatment? This would help to know your background better.

No, a TSH of 36.8 is well above the normal range and not normal at all.

[Tpink123 in reply to Jaydee1507]

Thank you I will complete

[PurpleNails Administrator]

Welcome to forum.

Is this the first test results you’ve had with abnormal results or are you being treated already?

What have you been told?

You have a very high TSH. The TSH (Thyroid stimulating hormone) is a pituitary hormone & it rises when thyroid hormones are low. It is signalling the thyroid to work harder, but the thyroid can’t keep up.

You also need to know what your FT4 & FT3 levels are, these are thyroid hormone (free thyroxine (T4) & free triiodothyronine (T3).

Were your FT4 & FT3 tested? And were any thyroid antibodies tested?

TSH over 10 requires treatment of replacement thyroid hormone levothyroxine. Have you been started on levo?

Usually Levothyroxine is started at 50mcg per day and then you need retest thyroid function & likely increases in steps of 25mcg daily. Every 6-8 weeks until TSH always under 2.

There’s lots of advice on forum & you may not lots of replies as it’s late but in the morning member will be here to offer lots of advice.

[Tpink123 in reply to PurpleNails]

I had my thyroid removed 15 years ago but over the last 5 years been mightmare unable to control it. They have now put me on liquid thyroxine to see if it helps, but looks like it hasn’t

I feel terrible

[PurpleNails Administrator in reply to Tpink123]

What was reason for thyroidectomy?

You must be struggling with low levels. What dose are you currently on.

Have your FT4 & FT3 been tested,? you need to know 1) what level your FT4 is and 2) if you are converting it to the active T3.

Low thyroid levels can affect absorption (often from low stomach acid) this cases poor absorption of nutrients too.

Have you been checked for things like coeliac, ferritin, folate, B12, and vitamin D?

[Tpink123 in reply to PurpleNails]

No I havnt nothing at all. All I get told is I’m not taking my medication. I’m so good at taking it on an empty stomach same tome on morning’s. Really getting to me now I’m frustrated the symptoms are horrible can’t take it. Not sure they don’t tell me the other levels I’m on liquid form now

[PurpleNails Administrator in reply to Tpink123]

The prescription would state on the medication bottle the dose you need to take.

I’d be frustrated too, doctors always imply you aren’t taking medicine if the reason for abnormal results isn’t obvious to them. Do you leave gap before eating? Do you take levo on its own ie not with any other medication or supplements.

An approximate guide is 1.6mcg levo per 1 kg Body weight.

Ask doctor to test those nutrient, if they won’t consider private test.

Many private testing companies offer option to take sample with DIY fingerprick kit. Or pay an addition fee for clinic visit / nurse home visit for venous draw.

I remind myself of things to remember for blood tests with this checklist

A - Always check what’s being tested & collect test results with reference range.

B - Biotin - cease 3 days before draw to avoid possible test interference

C - Consistent unchanged dose - minimum 6 weeks previously.

D - Delay replacement dose on day of test (until after blood draw)

E - Early morning appointment. (Book draw as close to 09.00 as possible)

F - Fast overnight. This can have a slight impact. Drink lots of water

For complete test you need TSH, FT4 & FT3.

Also important to test folate, ferritin, B12 & Vitamin D.

List of companies offering blood testing options included. Options vary from basic function, to packages including thyroid antibodies & key nutrients.

Medichecks thyroid advance good option as contains all the biomarkers & CRP inflammation marker.

thyroiduk.org/help-and-supp...

[Tpink123]

one on call doctor i spoke to last time regarding my results told me not to worry about the TSH levels they are not a concern is that right?

[PurpleNails Administrator in reply to Tpink123]

If FT4 & FT3 were at decent levels the TSH is almost always low in range or very low even. If TSH is as high as 36 it would be exceptionally rare for good thyroid hormones. It’s usually because of some test interference.

Doctor usually focus on TSH, but the focus should be FT4 & FT3. Without your FT4 & FT3 results & ranges we can’t assess the whole picture.

[Tpink123]

thank you so much for your advice

[DippyDame]

Absolutely not normal and any good medic should understand this....problem is, they don't!

Relying on TSH labs fails to give a full picture of your thyroid hormone status

It indicates overall thyroid hormone level but not that of each hormone.

However, at 36.8 ( if testing was accurate) TSH raises a red flag for quite severe hypothyroidism and a need for the initiation off ( more) replacement hormone.

Did you test close to 9am and at least an hour away from any food or drinks and 24 hrs after lastdose of levo?

You must be feeling under the weather!

FT3 followed by FT4 are the most important levels and I suspect both are low, particularly FT3 which is the active thyroid hormone which, for good health, needs to flood almost every cell in the body with an adequate and constant supply.

How much levo have you been prescribed?

Have you optimised vit D, vit B12, folate and ferritin.....likely all are low so impairing absorption.

To prevent going round in circles with medics who are clearly struggling, you need to have a full thyroid test to include...

TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies TPO and TG

Many of us test privately as follows...

thyroiduk.org/help-and-supp...

At very least test TSH, FT4 and FT3...

monitormyhealth.org.uk/thyr...

Discounts are available on test kits

Understandind our condition is vital so background reading helps

Have you seen this...

thyroiduk.org/if-you-are-hy...

To be told "I’m not taking my medication" when you are, is demoralising and an excuse when the wretched medic's diagnostic skills are inexcusably poor!

Well over 130,000 people who found themselves in similar circumstances have arrived here looking for help so you are not alone. I have a complicated thyroid condition and only found out why I was so ill, after I arrived here a number of years ago.

There is light at the end of the tunnel but I'd suggest your first step is full testing along with optimising essential nutrients.

Post any new results you have and we will then be better able to point the way forward.

We are all here to help...just ask!

[Tpink123 in reply to DippyDame]

Lol my doctor calked me said I don’t know what to do have to see your specialist. I was booked in for Friday now been cancelled till end of September!! So I’ve got to carry on feeling like this for another month!!!

[DippyDame in reply to Tpink123]

Can you contact the specialist or their secretary....expain you are at the end of your tether and ask if you might be fitted in to a cancellation slot before the end of September.....since you have already had a wait to be seen.

Failing that might you go to A&E.

The medical profession seem to have lost the plot!

Good luck.

[Tpink123 in reply to DippyDame]

Thank you I did go to A&E they told me I have to see my doctor lol

I will call them Monday to see if they can bring it forward

[gabkad]

Have you been tested for coeliac disease? Thyroxine is absorbed in the duodenum. If the lining of the duodenum is damaged, then absorption is compromised. It would appear that for whatever reason you are not absorbing the thyroxine. This is what needs to be investigated instead of doctors making the assumption that you are not compliant.

[Tpink123 in reply to gabkad]

Thank you the doctor just called me about my results and said not sure what to do you need to see your consultant I fed up with it just feel exhausted cry all the time no one helps me

[dunestar in reply to Tpink123]

I'm so sorry Tpink123 to read your post and see that you are feeling so unwell. It's very difficult to advocate for ourselves and fight to be heard when we are feeling at the end of our tether. Just sending you lots of positive energy to be able to get through things and find a way forward. I hope you can get an appointment with your consultant soon.