Is a TSH of 1.9 too high on levo?: Hi everyone... - Thyroid UK

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Is a TSH of 1.9 too high on levo?

momo33 profile image
momo33

Hi everyone,

I am due to see the doctor next week and would really appreciate your help. My last TSH on 100mcg of levo came back at 1.9 (the NHS won't test free T4 where I'm at, which is disappointing.) Although he seemed quite happy with this result, I feel pretty unwell with constipation, fatigue and general all round weariness. I want to ask him for a dosage increase- do you think I need one? Also, if I did get one I suppose he'd just give me an extra 25mcg which means I'll have to mix the brand I use just now (Actavis) with a different one- would this be okay?

Thanks so much to anybody who takes the time to respond!

Momo x

12 Replies
shaws profile image
shawsAdministrator

Your TSH is nearly 2, and most feel well if TSH is 1 or lower and some do need a suppressed TSH to feel well. Some doctors think, mistakenly, that a suppressed TSH will cause heart attacks etc which isn't true otherwise all of those who've had thyroid cancer who are given suppressive doses would have heart attacks.

You can say you've taken advice from the NHS Choices for dysfunctions of the thyroid gland - Thyroiduk.org.uk Read the bottom part of the following re TSH:

thyroiduk.org.uk/tuk/testin...

verywell.com/is-your-hypoth...

momo33 profile image
momo33 in reply to shaws

Hi Shaws, thanks very much for the information and also the links. I will print them off and take them to the doctor when I have my appointment next week.

Yes, my doctor seems reluctant to make me have too low a TSH. Everytime he's ever seen my TSH, he always says it's "normal" even when it was over 5!

It helps to have some documents to give him as he is quite open about the fact that he knows very little about thyroid disorders.

Thanks again!

Mine was 1.94 and GP is happy with this. Probably because my Endo wrote that my target TSH is 2 in 2012 after discharging me back to GP for ongoing monitoring.

I understand that the ideal is 1 or less. I only learned of this when I joined the forum. Where I am GPs are only allowed to test TSH in patients on Levothyroxine (so I am told).

If having lots of symptoms my GP would refer me back to Endocrinologist.

If you've been seen by Endo as recently as during the last 12 months then you can contact his secretary and ask to be seen in clinic as you are not well and not coping.

Haven't time to read all your post now will come back to it.

X🐥

Hi Mary-intussuception, thanks for responding. Yes, I felt better when my TSH was 1.2, but in the last year it has increased to 1.9 and I definitely feel the old symptoms returning (especially the weight gain and bloating).

Unfortunately my endo is utterly useless. She recommended that I only went on levo when my TSH reached 10, which thankfully didn't happen!

Hope you are feeling better soon.

Thanks for replying x

Momo33,

Ask your GP to increase dose. The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.2 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email enquires@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

momo33 profile image
momo33 in reply to Clutter

Hi Clutter, once again wonderful info- really appreciated. I will print out the article you sent me- it is so helpful to have it to give to my doctor. I am glad that my symptoms aren't just in my head. Because the doctor keeps saying I'm "fine", I was starting to wonder if I was imagining things (which makes me feel more depressed...not helpful at all!).

Thanks so much.

momo x

How on earth can a doctor tell a patient they are fine !!!

Thought it was up to us to tell them when we are not -and for them to explore cause of symptoms, diagnose and treat ???

I know. :( Sometimes I feel like a blood test rather than a person! I think he just looks at the blood test results and judges my medication on that, but this doesn't really take into account how I feel.

REALLY depend on what your ft3 ft4 levels are..if you are converting well etc....but for me I feel best closer to 1 and terrible if it goes over 2...on t4 only meds...

momo33 profile image
momo33 in reply to jacrjacr

I have no idea what my free t4 is as the NHS refuse to test it if your TSH is below a certain level here! Also have no idea if I'm converting. I am investigating the option of having private tests done to get these results!

jacrjacr profile image
jacrjacr in reply to momo33

well when I was t4 only meds my tsh was fine and my free t3 free t4 on low normal and I felt tired a lot and had plantar fasciitis in one foot and when I switched to nature throid and got to 2 grains , that went away....bec my ft3 was raised I believe....I wasn't a great converter...my free t3 was always low normal and I kept reading it needed to in the top 25% of normal....and when I got to 1.5 grains it was the same...it wasn't until it went to 2 grains that everything change thank goodness but majority drs don't understand this...

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Hi momo33 I would ask if there is a way to get a dose increase or add t3 med. I hope you start feeling better.

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