Where do I go from here?: Diagnosed hypo 3 years... - Thyroid UK

Thyroid UK

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Where do I go from here?


Diagnosed hypo 3 years ago I stayed on 50mcgs of Levo because I was told my results were 'normal'

First print-out from Oct 2013

TSH 3.15 (0.35-5.00)

Free T4 11.8 (11.0 - 23.0)

Earlier this year I found the thyroid UK site and this forum, they have been a godsend. I thought I was loosing my mind at one point but this forum helped arm me with information to discuss with my doctor.

By chance I saw a different GP in May who listened and ordered blood tests.

TSH 1.44 (0.35-5.00)

Free T4 16.0 (11.00-23.00)

Folate 9.3 (4.60-18.70)

Ferritin 71 (12-300)

B12 571 (200.00-900.00)

She agreed to increase my Levo to 75mcg I also started taking 'vitabiotics Neurozan' with vit D to help my foggy brain.

Blood results Sept

TSH 1.69 (Increased slightly)

Free T4 16.0 (Same as before)

Increased Levo to 100mcg

Results today

TSH 0.10

Free T4 16.7

Seeing my doctor Monday morning, do I need to be asking for T3 to be checked? (not done as a rule in my area) antibodies?

Really not sure what's going on, still symptomatic, exhausted, dry itchy skin, hair falling out, unable to loose weight, joint pain etc

I would be grateful fo any advice from you knowledable people.

S x

8 Replies

email louise.warvill@thyroiduk.org and ask for a copy of Dr Toft's article in Pulse Online. Go to question 6 and discuss with GP Dr Toft's advice. Ignore his last para as it is typical of what many really think. Dr Toft does mention about adding some T3.

Scampi, It's unlikely the lab will do FT3 until your TSH is suppressed <0.03. You can order a private FT3 test from Blue Horizon or Genova but I'd wait until you've bee on 100mcg for 3 months as FT3 doesn't respond to increased dose as quickly as TSH and FT4.

You're only recently on an optimal dose of Levothyroxine so most of your symptoms should improve over the next 2/3 months. Unfortunately hairloss can months and months to improve and weight loss can also be slow and difficult requiring exercise and some dieting.

I would ask your GP about thyroid peroxidase and thyroglobulin antibody tests to rule out autoimmune thyroid disease (Hashimoto's).

In light of your joint pain I'd also ask for a vitD test as deficiency/low levels can cause joint and bone pain.

Ricycle in reply to Clutter

Thank you for your reply Clutter, I didn't realise that it would take 3months before I saw an improvements in my symptoms. I will ask for the antibody and vitD (can't see that Vit D would be a problem tho as I have had a lot of sun this year) tests on Monday. I certainly don't feel overstimulated and hope that my GP doesn't want to reduce me back to 75mcgs. What I don't understand is why my free T4 level has hardly changed regardless of the increases.


Clutter in reply to Ricycle

Ricycle, but it has improved which is the important thing. You may have to negotiate if your GP wants to reduce your dose. Stress the improvement you're feeling and say you want to remain on the current dose. If necessary, agree to 75/100mcg alternate days.

Ricycle in reply to Clutter

?? I'm confused, I thought the free T4 was supposed to be in the top quarter of range. My doctor agreed back in May that we would try raise it to around 19 from 16 but through two raises in Levo it has only risen by .7

Sorry if I've missed the point somewhere along the way

S x

Clutter in reply to Ricycle

Ricycle, the top 75% of range is a general 'ideal' but it takes some time to get there after you are stable on an optimal dose, not as you're increasing dose to become optimal. If you take the 100mcg you may come close to FT4 19 in 2/3 months but if 100mcg makes you feel over medicated it may be that your personal ideal FT4 is 50-70% of range and not 75% which is a generalisation.

The important thing is to be on a dose on which you can feel well without feeling over or under medicated and not to target numbers which are based on general population ranges. Ideally, we'd all have had our thyroid function tests done before we became hypothyroid and we'd know the TSH, FT4 and FT3 we had when we felt well and not be squeezed into ranges or target ranges which reflect other people's levels.

Ricycle in reply to Clutter

I appreciate your explanation Clutter, it makes more sense to me now. Fingers crossed that my symptoms improve over the next couple of months, thanks again!

Clutter in reply to Ricycle

Ricycle, It is a royal pain that thyroid replacement takes so long to start working and undo the harm caused by lack of hormone over months/years. It's hard to accept that taking the pill isn't an instant fix like a painkiller can be. Give it time though and things will improve.

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