Test Results - no thyroid problem

[josiebloggs]

So I've finally had my results from the GP. She's concluded that I don't have any sort of thyroid problem and tbh, it looks to me as though she's right. Does anybody have any idea where I go from here?

SYMPTOMS - exhaustion, fatigue, dry eyes, high cholesterol, dizziness on and off all the time, GERD etc. Also thyroid swollen on one side of my throat

TEST RESULTS - March 2018 - TSH 2.2 (0.2-4.5) FT4 14 (9-21)

April 2018 - TSH 1.3 (0.2-4.5) FT4 13 (9-21) Vit D 92 (25-162)

July 2018 - Total T3 1.5 (0.9-2.4) FT3 3.4 (2.4-4.9) Anti Thyroid Peroxidase 41.8 Normal Range (0-100)

According to my bloods everything's within normal range so why do I feel so awful. Is there anything else I should be looking at? I'd be really grateful if anyone can help. I was so sure this was the answer

[Ansteynomad]

You seem to be in the same position as I was in some years ago. TSH well within range, but FT4 and FT3 in the bottom half of the reference range and the low FT3 causing classic symptoms of hypothyroidism.

RFU may disagree, but I think, although low in range, all your results are too high for this to be central or secondary hypothyroidism. I don't know what you would call it, but I am convinced my issues are all as a result of glandular fever.

I'll stick my neck out and say you'll never get a doctor to treat you, but I did in the end. I think it was easier for him to give me some Levo than to commit to reading all the research papers I had helpfully printed out for him. One dose of 75mcgs and my life changed overnight.

It will be interesting to see what others say, but if your symptoms are affecting your quality of life, you may need to do the research and then self-treat.

[apso in reply to Ansteynomad]

What do you mean by one dose of 75mcg Levothyroxine and my life changed overnight?

Do you mean you are convinced you were not hypo but your doctor prescribed Levothyroxine anyway and then you felt better?

I am asking because I do not think I am hypo but my endocrinologist has put me under Levothyroxine. I feel a bit better but I have side effects like brittle nails and tinnitus so I wondering whether I should stop but afraid to go back to where I was.

[dang in reply to apso]

Sorry to butt in, brittle nails are likely due to deficiencies in iron, b12, folic acid... tinnitus can be totally due to your current thyroid levels, when my levels are off I have constant tinnitus.

You may not be clinically hypothyroid, but your ft values are indicative of how you feel, and taking Levo should bring up those values and make you feel better.

Doctors often don’t lift a finger until the values become much worse, but I can tell you from experience something as simple as raising your FT3 from where you have it now up to the top portion of the range will make a world of difference. You’ll go from dragging your feet everywhere to having energy and sharp cognition all day long.

[Ruoveden in reply to dang]

Thanks Dang.

Sometimes I don't know anymore what I should do because I see my taking levo does not make my FT3 increase and at the same time people tell me not to "play" wit T3 because it can be dangerous. Do yo take pure T3? Or a combo or only levo (T4)?

[dang in reply to Ruoveden]

I take a combo. When I took levo alone my TSH went down, my FT4 went up but just like you my FT3 wouldn’t go up. My FT4 actually kept going over range and docs would lower my levo then TSH would rise. It was a mess.

The addition of T3 changed everything for me. I now take 100mcg T4 and 10mcg T3. This is much closer to the ratio of t4/t3 that the thyroid naturally produces. My FT3 finally went up and I started to feel much much much better.

Then recently I tried a reduction of my T4 and my FT3 also dropped, this to me shows that somehow with the addition of T3 I’m actually able to convert the T4 better. My Endo raised my T4 back up to 100 and now that’s the right dose for me. Without that little 10mcg T3 I wouldn’t be able to feel good.

Don’t listen to people who tell you scare stories, they are misinformed and likely have no experience themselves, what matters is how you feel and your quality of life! Until you feel right keep pushing, keep trying all possible avenues. Some people do badly on T3, many people (if not most) really need it to do better. And even if you just consider that without it your T4/T3 ratio is thrown off (since the thyroid produces T3 naturally) that means actually you have to be a REALLY good converter to end up with the amount of FT3 a regular person would have.

[apso in reply to dang]

Do you take your T3 in many doses throughout the day?

Do you take the T4 before sleeping at night or in the morning?

[dang in reply to apso]

I take my T4 and T3 all at the same time in the morning. My experience is that if you’re falling asleep or tired it’s likely you need to increase dosage rather than trying to split up your T3 throughout the day. I was on 5mcg T3 when I first started, it helped a lot in the morning but I was still getting tired in the afternoon, then I started adding a 5mcg dose around 3pm which worked well. After a couple months of that I decided to see what happens if i just take it all at once, no difference! And it was just so much easier.

I know some people need to split it up all day, but I think that has to do with if they’re combining with T4 or not, how much T3 they need, etc... in the end we’re all different and you just have to try all options and see which works best (and is most convenient too, taking pills all day long was so inconvenient for me).

[Ansteynomad in reply to apso]

I was convinced I was hypo. I'd basically diagnosed myself about five years before and fought for a proper diagnosis and treatment. After that first dose of Levo I had a proper night's sleep for the first time in years and woke refreshed in the morning to find that a lump I had had in my neck for two years (that had been diagnosed by an ENT consultant as acid reflux!) had gone, never to return. Three weeks later I bought a bike!

You suggestion that you might not be hypo is probably worth another thread.

[Ruoveden in reply to Ansteynomad]

Thank you very much

[josiebloggs]

Hi and thanks for the response. No, PA doesn't appear to be an issue. My folate was 16.8 (2.8-20) and B12 755 (180-2000) April this year. I have been supplementing since finishing chemo 4 years ago though so stopped all vitamins in May to see if they were covering anything up. I'll retest around September. Vitamin levels were checked to see if they were the cause of my tinnitus.

[Chippysue]

I battled to be diagnosed and was eventually but if I had my time again would have seen a homeopath and or Nutritional therapist. It is possible to get better by treating the root cause.

Gluten and dairy free diet is a game changer. I will message you.

[josiebloggs in reply to Chippysue]

Thank you, much appreciated.

[Beata_s]

Iron deficiency mimics hypo symptoms ; TPO is heme dependant ; worth testing ferritin ?

Zinc is also important in normal thyroid function but testing isn’t accurate but should resolve the brittle nails

If ferritin is adequate then perhaps look at copper levels ? Many think copper is evil and deficiency wouldn’t be common but even marginal one can cause symptoms related to iron deficiency - copper is needed to transport the iron so without it even with good ferritin levels you can still feel symptomatic

So sorry to hear about your cancer and now this , hope this helps ?

[josiebloggs in reply to Beata_s]

Thank you for your input. I think I'll look into nutrition for now and see how things progress.

[Ellieallen]

Hi Josie

I have experienced the same thing - all the symptoms but tests indicated ‘normal’ levels so no meds given. I asked for a referraltothe endocrinologist for a second opinion - following a blood test was informed that all mt levels tested as normal but I apoear to belong to a group if people (mainly women) who need to have their levels raised by ‘over medication’.

However the endocrinologist refused to dispense meds for me although she agreed that I have all the symptoms of an underactive thyroid and received meds previously in New Zealand whete I was working and felt so

much better when on those meds!

The endocrinologist toldme there was nothing she could do and I needed to go to a private thyroid practitioner to get the meds I needed!!!

Ellie

[josiebloggs in reply to Ellieallen]

Thank you. It's mad I have symptoms but bloods show nothing so no treatment! I'm going to investigate nutritional support for now and see how things progress.