LOW TSH WITH STABLE T4

[Whiskers3]

Hello, can anyone tell me whether it matters when your TSH is low? Mine is 0.04 mU/L and T4 is 16.7 pmol/L? My thyroxine has been reduced from 100mg to 87.5 mg and the TSH has increased from 0.03 mU/L to 0.04 mU/L in 6 weeks. I had a bone scan done on the advice of a private doctor and this came back positive for Osteopenia in the Femur neck - which, considering I'm over 55 years of age, possibly is normal aging?

[Gilly290405]

I wonder why they only reduced it to 87.5mg and not 75mg which I thought they would have done? Have you spoken to your Dr and asked to reduce it to 75mg and potentially another blood test in 6 weeks?

Also with regards to bone scanning (and I’m no expert I just listen to my osteopath) I would have thought this would have been in line with the aging process. I struggle with a stiff neck and I’m 48 and he always says if it was scanned it would be in line with aging.

[Gilly290405 in reply to Gilly290405]

I meant to say yes it does matter if your TSH is low. It means you are being over replaced and although the TSH (to be optimal) should be at the lower end of the TSH (so between 0.27 -2 is fab) is shouldn’t be low low. Mine is currently 0.01 so I know I need to drop to 75mg from 100mg. Just waiting for the dr to tell me 🙄

[SlowDragon Administrator in reply to Gilly290405]

Just testing TSH and Ft4 is completely inadequate

Essential to also test Ft3 and vitamin levels

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Or 8-10 weeks after dose reduction

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

What vitamin supplements are you taking

When were vitamin levels last tested

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[Whiskers3 in reply to SlowDragon]

Thank you for all your advice, all that information and the links are very much appreciated🙂. I have had very thorough blood testing, especially in 2022. My Hypothyroidism came from Graves Disease (which I believe isn't very common) and is considered autoimmune. I went to see a specialist endocrinologist privately just before my M.E./CFS diagnosis (in 2022) who tested everything and advised me not to take T3 or HRT. As I also have M.E./CFS as well, I will, however get a thorough test to check in a couple of months time, as my Levothyroxine dose has been reduced and the brand has been changed. I didn't get on with TEVA, possibly due to the ingredient Mannitol, so am taking Accord and Wockhardt.

[EchoWS in reply to Gilly290405]

Reducing to 87.5 is very reasonable. Possible going down to 75 would be too much to do all at once. Depending on range for T4 that number may be near the middle of the range so not indicating too much replacement, so consider how you feel at current level. Vitamin D is important for bone health so good to look at vitamin numbers as suggested below. Not sure on Osteopenia question.

[Whiskers3 in reply to EchoWS]

Thank you, that is very much appreciated. I am happy with the dose of Levothyroxine. I take vitamin D and Calcium (sorry should have mentioned it!). As I was diagnosed as severely vitamin D deficient in May 2022, despite the fact that I worked outside at the time!

[FallingInReverse]

hi Whiskers3 , Slowdragon gave you great advice/info, but we really need to know more about you to share any helpful opinions on your particular thyroid hormones.

Although and in fact, reading responses to your last post, those actually give the same advice we’d give now regards to your Thyroid. Which test results are needed, vitamin deficiencies that might be causing symptoms, sub-optimal thyroid hormones that might be creating symptoms that mimic CFS. Etc etc.

The very basic and generic answer is that once on thyroid hormone replacement, TSH is suppressed (which is not a problem at all), and TSH becomes the least important number to reference, and TSH should not be used as the one number to figure out dose changes.

Net net - generally a low TSH is not something to be concerned about.

But the big picture matters.

So if you are inclined to share your full blood results, and most importantly how you are feeling, please do.

I really hope you are better than 2 years ago! And if not, share your numbers and symptoms and we would love to weigh in the help.

[Whiskers3 in reply to FallingInReverse]

Thank you that is very much appreciated and quite a relief! When I have several appointments with an endocrinologist, who is very highly regarded and was recommended to me, he decided that my health issues were not due to my hypothyroidism or menopause, but most likely due to M.E./CFS. I am slightly better than I was in 2022, but my main problems of orthostatic intolerance and Post Exertional Malaise, remain and I have to spend most of my time resting in bed to avoid exacerbation of very unpleasant symptoms (nausea, migraines, fatigue, dizziness, aching, flu-like symptoms, etc.). These are very different symptoms than the ones I got from hypothyroidism, which has been well controlled for 26 years and during that time, I had two healthy children. During my pregnancy I was carefully monitored at a specialist hospital ward, due to my Hypothyroidism and my test results were all very good. I saw another specialist endocrinologist recently, due to lowish Cortisol (common in M.E./CFS patients) and they took more blood tests. My GP took advice from two endocrinologist specialists, who decided on the dose - as M.E./CFS patients are very sensitive to medication changes and I have tried 75mg before. I am also under the care of a specialist Cardiologist to help with my dizziness. I think the dose is right for me and thank you for relieving my concern about the TSH!

[FallingInReverse]

Also Whiskers3 - here is a recent post with lots of great info on osteopenia and its relation to our thyroid & hypo treatment.

A few of the posters in this link are super super smart : ), and also provides links to other great articles/studies/resources. So you will definitely find it useful:

healthunlocked.com/thyroidu...

[Whiskers3 in reply to FallingInReverse]

Thank you, that is really kind and very much appreciated.

[Whiskers3 in reply to FallingInReverse]

Further to previous answer - just to let you know, I was tested severely vitamin D Deficient in May 2022 and was put on a high dose (on prescription) of vitamin D, now I take vitamin D and Calcium tablets and eat a lot of natural Greek Yoghurt!

[greygoose]

which, considering I'm over 55 years of age, possibly is normal aging?

Totally agree with you.

You might find this article interesting - if you haven't read it already.

healthunlocked.com/thyroidu...

And this one saying that low TSH does not cause osteoporosis:

pubmed.ncbi.nlm.nih.gov/825...

Don't worry about a low TSH. Once it gets below 1 it's a very unreliable indicator of thyroid status. You can have a suppressed TSH but still have low thyroid hormone levels. It should never be used to dose with - that's the best way to keep a patient sick! It's low because your pituitary esteems that you don't need it anymore. But the pituitary is not always right.

[Whiskers3 in reply to greygoose]

Thank you. Wow, that is really interesting! 😮 And quite a relief!😊

[healthkiwi]

Don't forget your Vitamin K 2 Mk7 - essential if you're taking Vit D and calcium. Helps ensure calcium goes where it should in body, to bones and teeth, not arteries.

And you might want to consider magnesium too, works with calcium.

[Whiskers3 in reply to healthkiwi]

Thank you, I will take a look at that.😊

[FallingInReverse]

Hi Whiskers3

So glad this was helpful : ) Definitely don’t worry about your TSH, get all these tested (TSH, Free T4, FreeT3 plus your B12, Folate, Ferritin, and Vitamin D) AND add some mk-7 to your D. It prevents calcification in your blood and makes sure it gets to your bones and teeth. 100 mcg a day and up to 100 mcgs per 1000 ius of D is recommended.

It sounds like you have a robust and attentive care team - which is amazing and out of the ordinary!

That being said it’s important to know that doctors don’t get much training on the thyroid, and are often very misinformed about how to treat us.

Many of us here have these overlapping issues around thyroid, vitamin deficiency (caused by our hashis), peri/menopause, cortisol issues, intolerance to certain Levo brands, etc etc.

But as far as the thyroid goes, you are flying blind with out all of these:TSH, Free T4, FreeT3 plus your B12, Folate, Ferritin, and Vitamin D results.

In range is NOT the same as “normal”. If you still have symptoms you should get those tested, and go private like medichecks if you need to. You may have other problems but without those tests you will never know if your thyroid hormones are optimal.

[Whiskers3 in reply to FallingInReverse]

Thank you, will do. 😊

[thyr01d]

Hi, I am going against the grain here. My TSH is very low, similar to yours, which I discovered this week and yesterday I asked my endocrinologist if we could reduce my thyroid meds (he agreed enthusiastically). I do not believe osteopoenia is normal at your age, it's a precursor to osteoporosis pointing to all the risks of hip fracture. I too was found to have osteopoenia before being properly medicated and my lovely dentist found that the bone structure supporting my teeth was diminishing (forgotten the correct term) which can lead to teeth falling out (and presumably no possibility of false ones because of there being nothing to attach to). I think it's worth monitoring the osteopoenia, getting your jaw checked (perhaps x-rayed) by your dentist and seeing if you feel well with a less low TSH. Only an opinion, I am not medically trained.

[Whiskers3]

Thank you thyr01d, I hope you do well on a slightly lower dose. There seems to be some disagreement about whether or not TSH has any effect on your bone density, perhaps your doctor has a view? Though the M.E. specialist doctor I saw seemed adamant that there is a link. So I'm taking Calcium tablets with Magnesium and K2 MK-7 (to help with absorption).

I had the same thought about my jaw (as I've had problems with it in the past) and so I have had several x-rays and also a thorough Hospital 3D jaw scan, which was clear, because I have been having Invisalign treatment for the last 18 months, as my dentist said I had to have my teeth aligned properly before he could treat my bottom front teeth which are chipping away. I have been feeling alright (for me) on the lower dose Levothyroxine - though I have moderate/severe M.E. and am mainly housebound due to my M.E. symptoms, which in addition to the constant fatigue also cause dizziness and loss of balance. It's like walking around on a small boat in choppy waters!

[humanbean]

An interesting article on osteopenia that I think is worth reading :

npr.org/2009/12/21/12160981...

[Whiskers3]

thank you, will read that. 😀