Low TSH

[TeeDee63]

hello, I’m wondering if some of you knowledgeable people can give me some advice please. I feel under medicated on 75 mcg of levothyroxine, but the doctor insisted that I needed a blood test, even though they agreed my symptoms sounded like I needed an increase in meds. I’ve called the surgery and surprise surprise my results are normal and “ no further action”, and when I asked what the TSH was advised it is 0.67. My vitamin D was also tested and was normal at 77. I’m shocked that myTSH is low as I feel hypo still, but feel I now have no recourse to ask for an increase. As usual the T3 and 4 were not tested.

My blood test was at 8.15am, nothing to eat or drink, with last levo dose 24 hours before and b vitamins stopped the week previous.

I’ve been supplementing with the recommended vitamins ie b complex, b12, magnesium, and vitamin d spray.

I’m also trying to address low stomach acid by taking ACV with mother and the HCL pepsin with digestive bitters. I’ve been wheat, gluten and dairy free since May 22, and low fodmap for the past 6 weeks which have greatly helped my digestive issues. My life is ruled by medications/ timings and vitamins s etc in a quest to feel normal, which I don’t.

I apparently don’t have hashimotos as NHS and medichecks results came back as normal.

I really don’t know where to go from here. I am 65 kilos in weight which I know means I could be on 104 mcg levothyroxine if I use the calculation of 1.6 per kilo.

I have spare levothyroxine and am tempted to increase the dose myself to see if I feel better, what do you think?

Or shall I do a monitor my health full thyroid private test as they use NHS lab, and if the results show I need an increase, show to the doctor?

I don’t want to increase if I should get tested privately, and value your opinions, as it’s only through the knowledge and suggestions from you on this forum I’ve got this far, and I’m continually grateful for all the advice and knowledge I get from this forum.

So many thanks in advance

T xxx

[SlowDragon Administrator]

you need to retest full thyroid and vitamins

Previous post with Medichecks results 9 months ago

healthunlocked.com/thyroidu...

Ferritin extremely deficient

B12 severely deficient

Folate inadequate

Have you retested since this?

Are you vegetarian or vegan?

What vitamin supplements are you currently taking

Did GP test for Pernicious Anaemia and did they also prescribe iron supplements

[TeeDee63 in reply to SlowDragon]

Hi slowdragon,

Many thanks for you for your reply. I am not vegan or vegetarian. I am now high b12 as I did a course of b12 injections as the GP wouldn’t. I’ve since been tested and it is high. GP also insistent my ferritin / iron is ok. I haven’t tested since and neither the folate, although I take the basic b complex ( Thorne) and when unavailable I get the liposomal high potency b complex ones. I also take an extra b12 ( methylcobalamin) alternate zinc and copper daily, magnesium glycinate in the evening and vitamin d3.

GP did test for pernicious anaemia but came back negative.

Would you suggest I do the MMH blood test even though they don’t test the antibodies.

I have considered the thyroid ultrascan but I’m in Wales and the cost is £220, and I’m not sure that the results will justify the cost? Your thoughts on this will be appreciated as if it would benefit me in any way I will book one ( the GP wouldn’t even consider it).

Many thanks

T x

[SlowDragon Administrator in reply to TeeDee63]

Medichecks is currently on offer at £68

So probably worth the extra £3 to retest thyroid antibodies

If both antibodies are still negative, ideally get ultrasound scan done

£120 in B’ham was cheapest I could find

ultrasoundplus.co.uk/thyroi...

Where roughly in wales are you

[TeeDee63 in reply to SlowDragon]

Thank you Slowdragon. I am in Swansea, South West Wales. I will do the medichecks full thyroid blood test again as I had it done with them last year.

Many thanks for all your help

T x

[SlowDragon Administrator]

Test as next step

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Monitor My Health now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

thyroiduk.org/getting-a-dia...

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Might be worth getting ultrasound scan of thyroid

20% of Hashimoto's patients never have raised antibodies 

healthunlocked.com/thyroidu...

 

Paul Robson on atrophied thyroid - especially if no TPO antibodies 

 paulrobinsonthyroid.com/cou...

[Hidden]

TSH can be wonky/broken in many people, you need your frees sadly. I don’t know why we have so many incompetent doctors around but they never seem to learn 🤦‍♀️

[Hylda2]

My TSH is always 0.01! On 125 of Levo. They tried pitot down to 100 but couldn’t function

[AbiKat1]

You will need to test your T4 and TSH to get an accurate picture. Preferably T3 aswell. Strange that you feel underactive when the TSH is in the lower range which means working better.

Other testing should shed some light.

Medichecks full thyroid screen is very good if you want to test at home yourself.

Hope you get answers soon

[TeeDee63 in reply to AbiKat1]

Hi Abikat, I have the full thyroid medichecks and waiting to visit phlebotomy dept to have blood drawn ( I haven’t been successful when I’ve tried to do it myself) My test is due on the 21st ( 2/3 week waiting list) but hopefully the full test and results will make things a bit clearer.

Many thanks for your response.

Will post results in three weeks time.

Best wishes x

[tattybogle in reply to AbiKat1]

AbiKat1 just to clarify you comment " TSH is in the lower range which means working better."

.. once we are taking thyroid hormone, the TSH is not a measure of how well our thyroid is working.. it is a measure of the effect of the dose of thyroid hormone we are taking on the hypothalmus and pituitary.

The relationship of TSH to fT4/fT3 levels shifts a little bit once we are getting all our thyroid hormone as T4 from Levo.

We end up with TSH relatively lower and T4 relatively higher and T3 relatively lower than it was when our healthy thyroid was making both T4 and a bit of ready made T3 for us .

So 0.67 means a slightly different thing in someone who is taking thyroid hormone than it does in someone who isn't.

In someone who isn't taking thyroid hormone you would expect 0.67 to either mean they had 'enough' T4/T3 for them (if that was their usual TSH level) , or even 'slightly too much' T4/T3 (if their usual TSH level was closer to 1.5 /2 )

But in someone who IS taking thyroid hormone , TSH of 0.67 can SOMETIMES mean they are still not getting enough T3 for them to feel well. That person may then have to take more T4 to get enough T3 from it for all the different parts of their body to function well (because their thyroid is no longer giving them as much 'ready made' T3 as it used to when it was healthy).... and as a result their TSH may end up a bit below range.

And in that circumstance, a low TSH does not mean they are hyperthyroid / thyrotoxic, or even overmedicated .

Hope that makes sense .

[TeeDee63 in reply to tattybogle]

Thanks for clarification here. I was thinking I’m going crazy as I can’t function properly still, despite wheat, gluten and dairy free and following low fodmap diet. Optimising my vitamin levels following suggestions on this forum with b12, b complex, vitamin d with K2, magnesium glycinate, zinc and copper alternating days, ACV before meals alongside the Pepsin tablets I’ve seen recommended. I still cannot function. I take my 75 mcgs levo 5/6 am so on an empty stomach and don’t eat drink anything for at least 3/4 hours after. I’ll await my full thyroid medichecks draw on 21st to see what the t3/4 is and my vitamin levels.

Thanks to everyone for your continued support.

T x

[AbiKat1 in reply to tattybogle]

Thanks for your comments and explanations. I have been on thyroxine for 31 years now. Had all sorts of ups and downs and have fully dived into the explanations of results and effects on our bodies.

I can see what you mean about the T3 and sometimes having to take more T4.

However, when my TSH starts going lower in number - as you say means doing better, then I am carefully monitored because it can cause an array exhaustive symptoms. Which I now learn, that for myself this is due to it swinging into over active which is eveident when the T4 and 3 raise to the higher limit.

As a hashimotos sufferer it is difficult to interpret everything without having a big picture of your health and previous levels. A good doc with look at all of these. Or if like me, I have a 30 year long spreadsheet of them 🤨🤓

I have autoimmune thyroid, if I get a virus or bug I can swing into acute Thyroiditis. Thyroiditis thows extra thyroid hormones from your gland - (as some of the gland is still producing thyroid hormone naturally) into the body, which causes the TSH to go low and make you turn HYPER - overactive. This is then followed in the weeks to come by going back to under active and you are depleted. This is when medication then needs to be raised.

This happens to many people with hashimotos but they are not always aware of this.

So once the TSH is falling and symptoms occur then it’s always worth exploring further. Especially if it has gone out of the ‘normal range’

The thyroiditis led me into thyrotoxic crisis which I am now out of and back to regular underactive hashimotos. It was awful!

My thyroxine has to be lowered during these times of illness so not to lead to iatrogenic overdose of thyroxine as this would cause the body to become thyrotoxic and then nerve damage, and whole host of other things can occur, heart, head and bloodvessels etc.

Everyone’s body is different and result interpretations have to be done with caution by the docs and endo’s.

Covid has caused a lot of thyroid sufferers to get thyroiditis which has made under-active people on thyroxine swing into the opposite- thyrotoxic crisis.

It just worth being aware of the damage covid has caused as it can change the normal course for a lot of hashimoto sufferers.

I can only talk from my experiences and knowledge and understanding of this.

If it helps anyone that could be suffering from this, then I think it was worth mentioning it.

All the best to all