Suppressed TSH but still under medicated? - Thyroid UK

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Suppressed TSH but still under medicated?

2468kim profile image
20 Replies

I was living in the US and took compounded slow release combined thyroid medication for a number of years (T4 60mcg T3 33mcg) which gave me reasonable labs and I felt pretty ok for energy. Since moving back to the UK I have been switched over to synthetic hormones. Doc put me on levothyroxine 62.5mcg and Liothyronine 30mcg. My Free hormones stayed basically the same (low end of range) but my TSH tanked to <0.01. Needless to say they weren't happy and I was referred to an endo. After almost a year of feeling exhausted whilst trying to reduce my dose to raise my TSH she says she's happy to dose based on how I feel and ignore the TSH. We settled at 50mcg T4 and 30mcg T3

However, I started with a functional medicine doctor to try and get to the root of the issue and she consulted with a different endo who wants me to be an a more 'physiological' dose. My FMD asked me to try 75mcg T4 with 5mcg T3 added in three times a day. I'm at my wits end. I tried it and felt awful within 3 days. I'm now back on 50mcg T4 with 30mcg T3 (20 in am and 10 mid afternoon) and still not feeling great.

Does anyone know why my TSH is unreadable even though my free hormones are still pretty low?

These are my most recent labs

TSH <0.01

Free T4: 10.02 (12.87-19.3)

Total T4: 62.5 (77-153)

Free T3: 4.68 (4.61-5.38)

Total T3: 1.35 (1.39-2.59)

T3 uptake 31.7 (27-35)

TPO 4.99 (<34)

Thyroglubulin 9.99 (<115)

Reverse T3: 0.73 (0.36 - 0.9)

Free thyroxine index 1.53 (1.7-4.6)

Other possible factors?

Low Folate 16.99 (34-56)

Low DHEA 4.27 (7.42- 10.8)

High SHBG 200 (25-122)

Low total WBC's 2.1 (2.5-3.8)

(B12, vit D and Ferritin all good)

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2468kim
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20 Replies
jimh111 profile image
jimh111

When do you take your tablets and how long after did you have the blood taken?

2468kim profile image
2468kim in reply tojimh111

I had the blood test 9:30 am having last taken my meds 7:30 the day before.

jimh111 profile image
jimh111 in reply to2468kim

Your fT3 figure is meaningless as there is too much time between your tablet and taking the blood. Ideally you would have the blood taken about 10 hours after your daily tablet to give an average reading. It would be better to split your liothyronine dose taking half in the morning and half at bedtime.

I get the impression that TSH tends to respond a little more to maximum fT3 levels than average ones, especially if you take a single daily dose of liothyronine. So, again it is better to split doses. T3 has no more effect on TSH than T4 if you take into account liothyronine is about 3x as potent as levothyroxine. Many patients have a suppressed TSH when taking T3 simply because of the dose they are taking. The TSH is still reflecting blood hormone levels.

It seems you were lucky in the USA getting slow release preparations, the alternative in the UK is to split doses. The slow release nature of the USA T3 would have mitigated any effects of having the blood taken at the wrong time. I find the night time dose of L-T3 more effective than the daytime dose, the brain needs T3 at night when it is working hard to restore itself. I think your best options are to split your doses of UK liothyronine or import your USA tablets.

Your 'functional doctor' effectively reduced your overall dose (3 x 5 mcg L-T3 = 45 mcg L-T4) by giving you an extra 25 mcg L-T4 instead of 50 mcg. Also, it would have taken weeks for the extra 25 mcg L-T4 to build up due to its seven day half life. I'm wary of 'functional doctors' as they just seem to be less able ordinary doctors with woolly thinking and addtional charges.

2468kim profile image
2468kim in reply tojimh111

To be fair my FMD is also an MD ex army physician. She seemed keen to get me onto NDT until she consulted with an endocrinologist who suggested the new dosing. She admits to not knowing much about combined treatment which is why she decided to consult the endo who clearly doesn't know -

jimh111 profile image
jimh111 in reply to2468kim

Perfectly reasonable course of action, unfortunately many endocrinologists have little understanding of hypothyroidism. Not her fault.

greygoose profile image
greygoose

Probably just because you're taking T3. That's what usually happens. But, it's ok. Don't worry about it. Your TSH is low because you don't need it. Your pituitary senses that you don't need it and stops producing it. TSH certainly doesn't affect how you feel.

What is more concerning is why your FT3 is so low when you're taking all that hormone. How do you take it? Do you take it on an empty stomach, waiting at least one hour before eating or drinking anything other than water? Do you take any other supplements or medication at the same time?

2468kim profile image
2468kim in reply togreygoose

I take both first thing (around 7:30am) with water. About an hour or more later I eat and take my other supplements including fish oil. No coffee or dairy. I'm wondering if my gut health is poor and causing low absorption maybe?

greygoose profile image
greygoose in reply to2468kim

It's almost a forgone conclusion that your gut health is poor. Hypos usually have low stomach acid, making absorption of anything difficult. But, you would be better off leaving at least two hours between supplements and thyroid hormone, depending on what you're taking. If you're taking magnesium, iron, calcium or vit D, it should be a gap of four hours.

2468kim profile image
2468kim in reply togreygoose

Thanks. I am taking high strength vit D. Nobody has told me to wait that long. I'll give it a try.

greygoose profile image
greygoose in reply to2468kim

I don't suppose the doctors you've seen even know about that. :)

shaws profile image
shawsAdministrator

The blood tests were invented for levothyroxine alone (T4) so f we add in T3, or take T3 alone, or a combination T4/T3, it is how we 'feel' on particular doses which is the best guide.

The following doctor was an Adviser to TUK before his accidental death. He only took one blood test for the diagnosis and thereafter it was all about how the symptoms were relieved. He would never prescribe levo but NDT (natural dessicated thyroid hormones) or T3 only for thyroid hormone resistant patients. He also ran the Fibromyalgia Research Foundation, Drlowe.com and was an expert on Thyroid Hormone Resistance (those who cannot convert T4 to T3).

web.archive.org/web/2010103...

2468kim profile image
2468kim in reply toshaws

Thanks. Since my TSH is already gone I'm thinking I should try and raise my medication to get better free hormone levels but my doctor wants to lower it!

shaws profile image
shawsAdministrator in reply to2468kim

Doctors seem to be told that a low TSH will cause us to become hyper - active. If we take too much of any thyroid hormones we will feel awful with a fast pulst and higher temp.

The following may be helpful and doctor is an expert in all hormonesl:

hormonerestoration.com/

Excerpt:

" TSH is not a thyroid hormone and is not an appropriate guide to thyroid replacement therapy. The hypothalamic-pituitary secretion of TSH did not evolve to tell physicians what dose of levothyroxine a person should swallow every day. A low or suppressed TSH on replacement therapy is not the same thing as a low TSH in primary hyperthyroidism. If you have central hypothyroidism, the TSH will necessarily be low or

completely suppressed on T4/T3 therapy; your physician must treat you according to symptoms and the free T4/free T3 levels.

hormonerestoration.com/Thyr...

Pascha1 profile image
Pascha1 in reply toshaws

I think some Drs think that Hyper means we feel good when over medicated , when in real hyperthyroisim you feel pretty crap , so they have that wrong. I have argued this many times when i have been told Im ovrmedicated and told i'm Hyper my argument is I have been hyper and this was definitly not how hyper felt, They maybe able to fool people who havent had hyperthyroidism thats what they are feeling but not us that have had it ! you do not get cold and shivery being hyper

shaws profile image
shawsAdministrator in reply toPascha1

They don't know the difference between hypERthyroidism and hypOthyroidism and assume that a very low TSH when hypo has made us hyperthyroid.

shaws profile image
shawsAdministrator

Do you realise that T4 and T3 are not equivalent in dose. i.e. 100mcg T4 is equal to around 25mcg of T3 when we should gradually work up increases. Usually combinations of T4/T3 are recommended in a 3 to 1 or 4 to 1 basis. Neither do you need to split T3 doses. I have never done so as you have to make sure stomach is empty so I find one daily dose easier and forget I'm hypo.

2468kim profile image
2468kim in reply toshaws

Yes. I was on 4:1 ratio initially but increasing the dose wasn't raising my T3 which is why it was added in. I seem to have a conversion issue. (When I was originally diagnosed before I started thyroid medication my T4 and TSH were fine but I wasn't making T3)

shaws profile image
shawsAdministrator in reply to2468kim

I only recovered on T3 alone but everyone is different.

2468kim profile image
2468kim

Thanks. I'm seriously considering flying out twice a year for thyroid meds! At this point if my TSH is already suppressed I'm thinking of increasing my Levothyroxine. It is just odd to me that my US medicine did not completely suppress my TSH (it was always under 1 but readable)

SlowDragon profile image
SlowDragonAdministrator

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If also on T3, make sure to take last dose 12 hours prior to test

As you appear to have taken last dose of T3 26 hours prior to blood test, inevitably FT3 will be too low

Graph showing why to take T3 approx 12 hours before blood test

healthunlocked.com/api/redi...

Research Paper data comes from

ncbi.nlm.nih.gov/pmc/articl...

Your FT4 is also low, so increasing the Levothyroxine might be worth considering

There's absolutely no point doing any thyroid blood tests before 6-8 weeks after any change in dose

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