Advice please

[Lily07]

Hi I am new, since being diagnosed with hypothyroidism 5 years ago I have never felt completely better on levo or levo + T3. My current dose is 100mg.

Thanks for any advice

TSH 5.6 (0.2 - 4.2)

Free T3 4.0 (3.1 - 6.8)

Free T4 13.8 (12 - 22)

[SeasideSusie Remembering]

Hi Lily07

I'm not surprised you don't feel better with those results. You are undermedicated. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo.

As you have been on T3, presumably your endo took it away. Why was this?

Have you had other dose changes? What caused them? Do you have results of when they were changed and the dose you were on at the time?

Have you ever felt well on any dose, if so what were your results?

Have you had antibodies tested? Were they raised - Hashimoto's?

Have you had vitamins and minerals tested

Vit D

B12

Folate

Ferritin

Iron Panel

Full Blood Count

Are you supplementing, with what and the dose?

[Lily07 in reply to SeasideSusie]

Hi thanks for reply, my T3 at the time was taken away by a new endo. At the time my results were showing an over range free T4 and over range free T3 and suppressed TSH. I believe this was as a result of a Hashi flare but endo wouldn't admit to that, I didn't expect him to and I think he was using the results as a means to remove the T3 anyway due to costs that I have read so much about.

Since the Hashi flare 3 months ago I have been much more sensitive to the cold and after being out in the cold today I was very tired and slept for an hour and a half. Periods are more painful and heavy. I have PCOS but not treated for it. Bowels are more sluggish too. I used to open my bowels every day, now it's less frequent.

I can post other results for thyroid if needed. Never felt well on any dose but could be as a result of low vitamin and mineral levels or not going gluten free.

Yes positive for thyroid antibodies

TPO antibodies 404.5 (<34)

TG antibodies 257.3 (<115)

I was going to post vitamins and minerals separately, will put them on this post.

[Lily07 in reply to SeasideSusie]

Ok, so other results are

Sept 2017 - 150mcg levo

TSH 0.07 (0.2 - 4.2)

Free T4 20.3 (12 - 22)

Free T3 4.6 (3.1 - 6.8)

Jul 2017 - 150mcg levo and 10mcg T3 - when endo took T3 away

TSH <0.02 (0.2 - 4.2)

Free T4 23.1 (12 - 22)

Free T3 6.4 (3.1 - 6.8)

Jan 2017 - 125mcg levo and 10mcg T3

TSH 1.78 (0.2 - 4.2)

Free T4 16.1 (12 - 22)

Free T3 4.5 (3.1 - 6.8)

Nov 2016 - 125mcg levo and 10mcg T3 - endo would not increase saying there was no scope to increase despite TSH not being where she wanted it

TSH 3.60 (0.2 - 4.2)

Free T4 18.3 (12 - 22)

Free T3 5.0 (3.1 - 6.8)

May 2016 - 100mcg levo and 10mcg T3

TSH 2.97 (0.2 - 4.2)

Free T4 17.6 (12 - 22)

Free T3 4.5 (3.1 - 6.8)

Feb 2016 - 75mcg levo and 10mcg T3

TSH 6.32 (0.2 - 4.2)

Free T4 12.5 (12 - 22)

Free T3 4.3 (3.1 - 6.8)

Dec 2015 - 75mcg levo and 10mcg T3 - did not feel completely well on this dose but could be because I had low vitamins and minerals. Endo said not possible to have symptoms from low vitamins and minerals

TSH <0.02 (0.2 - 4.2)

Free T4 20.2 (12 - 22)

Free T3 5.3 (3.1 - 6.8)

Oct 2015 (75mcg levo and 10mcg T3)

TSH <0.02 (0.2 - 4.2)

Free T4 20.6 (12 - 22)

Free T3 5.6 (3.1 - 6.8)

Aug 2015 (175mcg levo)

TSH 1.26 (0.2 - 4.2)

Free T4 19.7 (12 - 22)

Free T3 4.0 (3.1 - 6.8)

Jun 2015 (150mcg levo)

TSH 6.26 (0.2 - 4.2)

Free T4 28.3 (12 - 22)

Free T3 5.1 (3.1 - 6.8)

Mar 2015 (125mcg levo)

TSH 3.89 (0.2 - 4.2)

Free T4 13.4 (12 - 22)

Free T3 4.1 (3.1 - 6.8)

Dec 2014 (100mcg levo)

TSH 7.40 (0.2 - 4.2)

Free T4 15.6 (12 - 22)

Free T3 4.3 (3.1 - 6.8)

Sep 2014 (75mcg levo)

TSH 2.57 (0.2 - 4.2)

Free T4 15.1 (12 - 22)

Free T3 4.0 (3.1 - 6.8)

Jul 2014 (levo stopped, GP said I was abusing it and she told me to attend counselling, if I didn't do this she said she would deregister me from the surgery)

TSH 0.03 (0.2 - 4.2)

Free T4 25.6 (12 - 22)

Free T3 6.2 (3.1 - 6.8)

Mar 2014 (125mcg levo - GP wouldn't increase)

TSH 3.80 (0.2 - 4.2)

Free T4 13.3 (12 - 22)

Free T3 4.2 (3.1 - 6.8)

Dec 2013 (125mcg levo)

TSH 4.50 (0.2 - 4.2)

Free T4 15.6 (12 - 22)

Free T3 5.4 (3.1 - 6.8)

Aug 2013 (100mcg levo)

TSH 4.00 (0.2 - 4.2)

Free T4 14.2 (12 - 22)

Free T3 4.1 (3.1 - 6.8)

Jun 2013 (75mcg levo)

TSH 10.6 (0.2 - 4.2)

Free T4 12.7 (12 - 22)

Free T3 4.0 (3.1 - 6.8)

Jan 2013 (50mcg levo)

TSH 0.68 (0.2 - 4.2)

Nov 2012 (diagnosis of hypothyroidism)

TSH 35.8 (0.2 - 4.2)

Free T4 10.2 (12 - 22)

[Lily07]

Monitored every 3 months for iron deficiency anaemia, latest result in October 2017, taking 1 ferrous fumarate 210mg a day. No longer under haematologist and GP has questioned me taking just 1 ferrous fumarate a day but letter from haematologist says I was discharged from department with 1 ferrous fumarate to take a day

Ferritin 37 (30 - 400, haematologist recommended range 50 - 400) was boosted to 187 after iron infusion 1 year ago. Haemoglobin went up to 135 (115 - 150) and MCV went up to 82 (80 - 98) and MCHC 349 (310 - 350) Iron 12 (6 - 26) Transferrin saturation % 18 (12 - 45)

Latest results done October 2017 show complete blood haemoglobin 126 (115 - 150) MCV 77.5 (80 - 98) MCHC 378 (310 - 350) Iron 9.2 (6 - 26) Transferrin saturation % 20 (12 - 45)

October 2017

Folate 2.3 (2.5 - 19.5) restarting folic acid once a day after first B12 injection in August 2017

February 2017

Vitamin B12 445 (190 - 900) prescribed 1 B12 injection every 3 months for symptoms of low B12, negative for intrinsic factor antibodies. Tried supplementing with 1000mg Better You B12 spray but level didn't rise much on this.

August 2017

Total 25 OH vitamin D 63.2 (50 - 75 vitamin D may be suboptimal, and long-term may lead to clinical effects. Advise on safe sun exposure and diet. Supplementation is indicated) never been someone who likes the sun so understandably found to be vitamin D deficient in 2013. Was prescribed 800iu vitamin D3 (Fultium/Desunin) tablets but never got on with these, they hurt my stomach and did not raise my levels that much so bought Better You D Lux 3000iu sublingual spray in 2014. Again levels did not raise much over the year so doubled it to 6000iu and levels were still a bit slow in rising over 2015 and 2016. Now just taking 3000iu since January 2017.

Also taking magnesium spray (also Better You) because I am prone to magnesium deficiency (cramps, tremor, spasms, weakness, loss of appetite, tingling, numbness, nausea, low calcium, low potassium) and I take this at night since it helps me sleep. It leaves a bit of a residue on my skin but because of swallowing problems (goitre/neck swelling) the spray was the only option.

I am sure I have other vitamin and mineral deficiencies but I don't know if the NHS will test for every single one (especially the B vitamins and vitamin C since I get bruising and bleeding gums - scurvy??) and I could end up confusing things in getting myself better.

[SlowDragon Administrator]

Presumably you have been reading posts on here, so you will know that very high percentage with Hashimoto's are gluten intolerant

A small percentage (5%) are coeliac. You might consider asking GP to test. This has to be endoscopy, blood test is too unreliable. But over 80% find gluten free diet significant improvement.

Can help heal gut and reduce Hashimoto's swings and flares

Your vitamin levels need serious improvement, just proves how bad your gut function is

Your GP and endo seem to have little idea. (Esp when told you were abusing meds - which was no doubt a Hashi flare)

Changing to a strictly gluten free diet may help reduce symptoms.

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Low stomach acid can be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

Gut infections can be trigger

hypothyroidmom.com/hashimot...

Great film definitely shows why just testing TSH is inadequate and important vitamins

drbradshook.com/understandi...

See SeasideSusie detailed vitamin advice

healthunlocked.com/thyroidu...

Personally I take 6000iu vitamin D most the time, if I lower dose, levels drop.

I use calm vitality magnesium powder- very easy and cheap.

Vitamin C daily - I think it helps adrenals.

If taking B12 or having B12 injections it's recommended tomalso take good B complex to keep all the other B's in balance

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

You might also consider zinc and possibly low dose vitamin A