Any idea what's happening here?

[Ansteynomad]

I started on 75mcg levo on 10 June. I noticed improvements from the very first dose and felt so good that I decided to take a chance and increase to 100mcg after six weeks. I felt even better and even started to lose some weight. I’d lost a stone and bought a bike by the time I got tested after six weeks on 75mcg and five weeks on 100mcg.

TSH <0.02 (0.35-6)

FT4 28.3 (9-26)

No FT3 was done but at the time I had an average temperature of 36.1 and fairly serious problems with constipation despite getting plenty of exercise, my 5 a day and drinking plenty of water, so no signs at all of being hyper.

I discussed these results with my GP and we agreed that I would drop to 75/100 alternately. I did this and after four weeks I had to stop riding the bike. I was starting to feel tired, achy, my sleep was disturbed – the usual things. My DH said my mood was down and I could see that my hair was falling out again. Also, despite not changing the way I was eating, I have not lost a single pound since I dropped to 75/100.

I decided to take a chance and see what would happen if I went back up to 100mcg. I did that two weeks ago and now feel worse than ever. Exhausted, dizzy, vaguely nauseous, ‘down’, lethargic, anxious, my fingernails are breaking again, my hair is still falling out and there is, inevitably, no weight loss, even though I am back on the bike. The weirdest symptom is that I have very sore breasts, not related to PMS (I am post menopausal). My average basal temperature is still 36.1.

I’m going to get tested soon, but I wondered whether anyone had any idea what might be happening here? I’m OK with the suppressed TSH, my TSH has never been reliable, which is one of the reasons it has taken nine years to get to this point, but why would my FT4 be so high? Is it all settling down now and I actually need an increase? I just don’t know.

What I do know, is that after spending the last ten years fighting the medical establishment, I didn‘t expect to feel quite this bad now.

PS: D, B12, folate and ferritin are all optimal and I have passed the adrenal fatigue questionnaire with flying colours.

[helvella]

The first question has to be: How long between your last dose of levo and the blood draw for that test?

Rod

[Jackie]

Hi Weight loss and over weight most commonly associated with low FT3, and lots of symptoms too. You need a test for Free T3 done at the same time. I suspect you need less T4 ( levo) and a little T3. GP may be jumpy about this so may need to see an Endo.( choose before asking GP to refer you, important) However, it may lower you TSH which is why. For lower than normal TSH, you need a 24 hour urine collection for a test for Pituitary gland, unlikely ,but needs ruling out. Only the 3 thyroid tests will show what is happening, no other way. You also need all the tests associated with thyroid, see TUK, especially Vit D.,( hormonal). GP should do those, an Endo does automatically.

Best wishes,

Jackie

[shaws]

Please read the question dated January 25, 2002

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

[Ansteynomad]

After four years and 14 endo appointments, I was discharged by our local hospital as having 'no endocrine reason' for my symptoms. In that time I have had every test known to man, so I know my pituitary is OK as well as ferritin, vitamins D and B12 and folate. I also do not have adrenal hypofunction of any kind.

I was at one point on T3 only, but after the first year I had a horrendous mix of hypo and hyper symptoms, that no-one could help me with or advise me about. It was while I was on T3 that I put on three stone, even though my blood results were textbook. The endo took me off it in the end because of fears of liver damage and then told me I was not and had never been hypo! My TSH at that point was 4.2 (0.35-6), my FT4 10 (9-26) and my FT3 3.8 (2.8-7).

For the last test the blood was drawn at 8.00am on Monday morning and I had not had any levo since the previous Saturday night.

[Jackie in reply to Ansteynomad]

Hi again,

Treatment with T4 and just a little T3 is normally considered the back, not just T4, From that result ,it looks to me that you certainly need T4 and a little T3. The T3 lowers your TSH. However, if your body is converting the T4 as needed to T3 that is the same. , however, most Endo`s and sufferers find the balance is better with a little help from taking T3 in addition.T3 on its own is normally only used if T4 combination is not suitable ie bad reaction to levo and Armour not given, that depends on the Endo and if lucky the GP.If you want to contact some one specifically, you need to press reply to this, directly under that post.

I hope that helps.

Jackie

[Hidden]

Just a suggestion for the sore breasts (!) Try adding in a good B-Complex it might help. If you've optimised your B12 and folate with supplements, you could have thrown your other Bs out of balance. Many many years ago when I was a teenager I went to the docs with that symptom, and I remember quite clearly being prescribed a B vitamin, I think it was B6. Anyway, best to balance them all. I take this one (they do 100 and 120 capsules as well):

breakspearstore.co.uk/produ...

[Hidden in reply to Hidden]

And on the subject of a B-Complex, biotin (B7) is used in the treatment of hair loss:

nlm.nih.gov/medlineplus/dru...

[Hidden in reply to Hidden]

interesting, I too think just supplementing one thing throws others out of balance (B3 nictotenic acid is one example - aka smoking) I thought it was ferritin for hair loss, I stand corrected. USA guys recommend B complex since awhile not just B12, but B12 injections are often given for pain over there - and why not? any excess is wee'd out (water soluble) so it's fine. J x

[Hidden in reply to Hidden]

I think you're right, iron is also implicated in hair loss. There never is just one answer, if there was we'd all be skipping around 100% well! Anyone taking B12, either injections or sublinguals, should invest in a good B-Complex as well, IMHO. x

[Ansteynomad]

Dr Lowe appears to contradict himself, saying on the one hand that we need enough T4 to suppress the TSH to feel well and on the other that if the TSH is suppressed we will still not have enough T3 and will still feel rubbish.

I can't see how we can square that up. I can only assume that my FT3 at the last test was still within range. A work colleague with a suppressed TSH, an FT4 above range but lower than mine and an FT3 just over range is being treated for Graves, but I can't see that I am in any way hyper.

I would be nervous about taking T3 again, given that I had such a horrendous experience with it before, particularly with the liver involvement, which was never fully explained, but which was of great concern to the endos.

I have washed my hair this morning and it is coming out in handfuls. I lost over half of it on T3 only. I hope it is not going to be as bad as that again.

[Heloise in reply to Ansteynomad]

stopthethyroidmadness.com/t...

I don't know if this will help or not. I am curious if you had the adrenal saliva test to determine that you do not have adrenal issues. It's said to be the only reliable one.

[Ansteynomad]

No Heloise, not the saliva test, but I have had all the testing the NHS offers and passed with flying colours, I have worked on supporting my adrenals for the last three years and now score negative on the adrenal fatigue questionnaires. In those circumstances I am not sure that there are any indicators for taking the saliva test.